My daughter was recently diagnosed with Henoch-Schönlein Purpura and it broke my heart seeing her having a hard time walking and seeing the rash all over her legs. It even spread to her face. I'm glad I ran across this video because it just seemed like the doctors here didn't care about what was going on. She now has a referral to a nephrologist and a dermatologist so please pray for us that we can get this under control. 💕
I once under hsp when I was 10 and it was truely a nightmare . But I gone throgh it and it took me about 2 months treating . No recurrence until now and I’m so cherish for that . Hope u and your little girl be brave enough to face it . After rain comes sunshine 🦾🦾
She’s going to get better, I was diagnose 19 years ago, when I was 6, and the 3 following yrs it was controlled with steroids, a fact is that usually ppl get fatty by taking steroids but just for few years
I also suffered from his hellish affliction 2 weeks before Christmas of 1997. I was 16 yrs. old and a sophomore in high school. The first sign I knew something was very very wrong was the most intense stomach cramps alongside recurring abdominal stabbing pains. After 2 nights of the pain increasing over that duration I was in such pain I had to sit doubled over grasping my legs as to almost crush the stomach cramps away. This is when I started seeing a great deal of blood in my very very loose stool and the time I would finally go to the ER. At the hospital they assumed it was solely my appendix. So it was removed. Initially I felt much better with the aid of hefty narcotics. But within a week I was right back where I started, doubled over in pain and at the ER. Only this time I was not just admitted to the hospital. I spent over a week there in quarantine as doctors had no idea what was causing my symptoms. However, I had been trying to tell the doctors about the purple spots that were now covering my thighs and buttocks that weren’t raised, but flat and had a hot ashy feeling. That’s the best way I can describe what they felt like. Eventually they spread all the way down to my feet and up to my forearms. While in the hospital I was only having my pain managed. Thankfully one day my dermatologist just happened to be walking down the hall of the hospital and my mom stopped him and asked if he could look at my spots. He had a biopsy done immediately. And the next day or so they finally were able to diagnose me with HSP Vasculitis. I was put on high doses of prednisone and started to see a great decline in my pain as well as a drop in the amount of spots covering my body. Eventually I’d start seeing a rare disease and rheumatology doctor who would add methotrexate to the prednisone I was already taking. I started feeling much better over the next several weeks. But would still suffer these reoccurring bouts with intense abdominal pains. This would go on for another year and a half. And I had to stay on the two medications for approximately 3 years total. The whole thing was a nightmare. And I wish anyone currently suffering from this horrible affliction a speedy recovery.
I have this disease, too. Actually, in 1998. It is reoccurring, and I cant get immunizations as an adult. When I was pregnant with my daughter I got the TDAP shot, and it actually ended up with dangerously low blood platelets and high white blood cells. When I had my son, the doctors at the big hospitals knew what to do, and I had medication and blood transfusions. I have arthritis as an adult, which never went away from when I acquired this as a child. I never met anyone else who had this disease. Take care fellow hsp friend.
I had hsp when I was about 8, 1994, and was told to ecpect to die overnight- assumed blood infection. I spent 4wks in the hospital and developed very bad knee and ankle pain that continues to this day. Hellish for a kid and scared the crap out of me, an 8yo, being told I was going to die and my folks on the verge of a breakdown for the same reason
I already visited 5 doctors and all of them say this disease is incurable. Please if you know what medicine you took I'll appreciate. I'm considering suicid3
@@Metanol_man dude i had this disease and am fine now....just go to your doctor and ask for help dude... please don't give up .....all of ua who are cured now didn't give up.... you'll be fine dude ....i love you .
I've just had HSP for about 6 months, from Nov 2021 to May 2022 (I'm 26). The way this disease destroyed my self-confidence and had my lifestyle change drastically was really hard. I didn't go out of my house for over 60 consecutive days because the doctors thought the purpura might worsen from standing up/walking too much due to increased blood flow to the lower limbs, which is up for debate at this point now that they finally diagnosed me. This disease for me has been more of a mental challenge than anything else. I hope so deeply it won't come back.
@@humairaakbar5191 No, it hasn't come back. I'm incredibly glad! Although it did relapse several times during that period. Seemed like it was healing, then new stains appeared all over, two or three weeks later, four of five times over several months. Flare-ups came in batches. Today I'm still having some side effects from taking prednisone for a long period: my immune system hasn't completely recovered from the high dosage I took and now I have adult acne because my skin can't defend itself as well against bacteria since then.
I still have this now and its been 3 months going to 4th month of medication I kinda get lonely sometimes because I cannot wear shorts anymore in outside places , Praying for all the people here who still have this that we cab through it! Glad to see comments here I kinda find a community in here
I had this when I was 7 and it last pretty hard-core for only 2 years if I remember correctly... I'm 40 now and seem healthier then most of my friends... hope it helps
It's been a year and after a long medication and series of check ups I just want to update all you that I already recovered from this and I can wear shorts again ☺️ Hoping everyone who still has this will be strong to conquer this journey ❤️
Praying your medication works. My grandson’s kidneys can’t process phosphorus. They are giving him medication that bonds with it to get it out of the body.
I had this purpura thing a long time ago and actually, I can't remember anything, I just know I was in the hospital and my mum was crying. So today I randomly decided that I'm gonna find something about it. Thanks for the video.
@@beautilfuldoveonearth5447 HSP/ Henoch-Schonlein Purpura. Autoimmune disease. Targets Blood vessels and capillaries all over the body, including skin, organs, gastrointestinal tract, and joints. Causes a bruising and rash.
Hello, I also have HSP since 1 month ago. and is still ongoing. although I don't know how it started. and when will it end. if i may know, are you healed now? how long have you been through that time?
This video was very helpful! My daughter is 7 was just diagnosed with this, terrible leg and knee pain she couldn’t walk along with the purpura which led us to the ER
My 5 year old granddaughter is going through this right now. She is having a kidney biopsy tomorrow. Anyone who reads this , please say a prayer for my Verra
if you're reading this and you suffer from HSP right now, here's what i think you should do: rather than asking for immunosupressant drugs which is always a risk in itself, 1. start intermittent fasting as well as 48 hours of full fasting a week, and 2. go on a hypoallegric diet. exclude every food that can cause allergies until the rash/pain disappears. that leaves you with: all meat, buckwheat, rice, some mushrooms, cabbage, cucumber, butter or ghee, peas. don't eat anything with emulgators or precooked, cook your own meals, and heatig them is better than raw. once/if the symptoms subside, the tedious part is reintroducing all other foods one by one. first week try diary, second try fish and shrimp. and so on until you find something. even if it's nothing. even if you end up not having an allergy after this (which is very lucky). and if you see a reaction, immediatelly go back to the fast and the save diet again and write down what caused it. i personally think HSP is triggered by gluten. in my journey i had to exclude bread and wheat products. granted i still eat them, this isn't crohns and not an actual allergy, but i am very careful and "respectful" of gluten now. i really don't want to be immobile and swelling every day in a new place again. goes without saying but dont strain your immune system. wear scarfs and no swimming in cold waters. good luck and i'm praying for you.
I got a pretty severe case of this a few years back at 35 yo. First the rashes appeared but I wasnt able to self diagnose until a couple days later when abdominal and joint pain came into the mix. After a stay in the hospital it was confirmed but no treatment (steroids, cortizone, etc) helped one bit, until I discovered a medical paper touting the effects of Colchicine. Doctors and I were both sceptical but I tell you it worked almost immediately. Joint and GI issues became nearly nonexistent and the vasculitis started clearing to almost nothing in a couple weeks. A couple warnings, though. First, you cannot drink alcohol with Colchicine, period. I'm a heavy drinker usually and I threw up violently while mixing the two, after a minimal amount of booze. Second, if it does work for you do not stop treatment until the Rx is over and the rash is gone, or it will come right back. Thanks for the informative video, and blessings to you all.
My son Was 5 when he had this during a school farm visit. I was a helper and he was steadily becoming slower walking and complaining he couldn’t walk. Then after his lunch he couldn’t stand up. I looked at his legs-big red blotches! I took him straight to hospital. The following weeks he often peed pure blood. Very scary. But he recovered fine and hopefully no long term affects.
my son 10 years old is suffering with hsp, from 14 days, he is having rashes all over the body, swelling in feet, suffering from pain, iam praying to God, please all of you pray for him to reduce soon
I have had this illness for 4 months now. I was under the impression I was healing, and bouncing back because the ulcerations all over my legs are healing and I can walk again. We’ve started to taper me off the steroids. Today they called about my renal biopsy and the disease is still active in my kidneys, and have done a lot of damage. They’re not exactly sure what the next step is, maybe a 3 day stay for a high dose IV steroid. You take health for granted. It’s random. We don’t appreciate the basic things in life enough. Just being able to walk. To not be in pain. To not constantly have SOMETHING wrong with me.
@@MegaCocoa11 I feel like there is a lot unknown about this certain disease. If your version differs from the textbook one, doctors seem lost on what to do (next). Atleast, here in my country (NL). It is a extremely frustrating, scary and life changing disease because of this. Sending lots of love and strenght to you, your boy and all the involved. It’s not easy to have this disease, but it’s also not easy to watch someone you love be in so much pain, discomfort and fear 24/7 and being able to do absolutely nothing to help them.
Diagnosed with this last April. Rash started first. Then my joints to where I couldn’t walk. Feet & hands swelled up. Abdominal pain & throwing up. Spent 6 days in the hospital. Lost 40 pounds. Took 6 weeks to recover. 60mg of prednisone for weeks finally made a difference. Still dealing with the kidney issue. High protein & blood in urine. I wouldn’t wish that experience on anyone. Especially children!
This sounds almost exactly like my case. I'm going on 3 years now. I'm actually starting to have another outbreak as I'm typing this. How is your case going? I can't afford the bill for specialists, and my insurance won't cover it because I can't afford to meet my deductible. I now have a baby on the way, and it terrifies me that it's possible for it to end in kidney failure. Have you noticed any triggers? I haven't connected the dots yet.. but I have noticed that my worst flare-ups have been in cold weather. A low inflammation diet helped tremendously, but now I'm traveling for work, and it's hard to stay on a diet.
I suffered from hsp when i was 6, i am now 29. it started with a little fever, the fever went away after a few days but then my knees and ankles started swelling suddenly with sever pain, making it difficult for me to walk. I clearly remember the swelling started while i was sitting in a Mcdonalds with my mom and brother. And after a few hours i couldn't walk by myself. I had been complaining about a little pain in my ankles that morning. We came back home with everyone worried sick because my legs were swollen and my stomach started hurting. The hellish pain continued. I still get chills when i remember the pain. It started getting worse as there was constant pain in my abdomen and my legs and i lost my appetite and started throwing up very frequently. Mind you this was in the year 2000. My parents took me to so many doctors, no one could figure out what was wrong. I started having red spots on my lower body, back and arms and i was taken to a hospital. I was at the hospital for 3 days which felt like weeks. I went through series of tests and finally the doctors had an answer. My family was so worried sick during that time. When i got older my mom told me about how scared everyone was and didn't know how to ease the pain i was in. I would murmur in my sleep because of the abdominal pain. It was on bed rest for a few months as the doctor told them that i should not have any type of physical trauma. I didn't go to school for 4 months. I wasn't allowed to play outside with my friends for those 4 months too. I hated the medicines i was on. I hated that my parents had to be on the look out for any recurrence of the disease. I have always loved henna on my hands even as a child. I was not allowed to get it done for more than a year. All because everyone had to be on the lookout for a recurrence. Thankfully it did not recur. But the entire experience was horrible for me and my family. I recently read something about bleeding disorders and decided to know more about what happened to me.
My god! I was diagnosed in 1996 and have looked up stuff on the internet from time to time. Your comment hits home to me more than anything I’ve read before
@@AbhishekSingh-ui2nu i don't have the best immunity. I get colds easily. Some allergies i developed over the years. But nothing that can be managed without medicines.
I have this HSP for about a week now, I hate seeing my skin all purple and red especially all over my body and having to worry about if I ever will go back to normal again. I wouldn’t wish this on anyone at all, it really is the worst experience ever
i was diagnosed with HSP like a month ago, it became better but now it came back, it's hard not to do things you are used to because you need to rest a lot but at the same time you don't really feel that ill, it's weird
Many thanks for this video. I would add re the prognosis in HSP- IgA nephropathy progresses quite slowly. Only half of patients will have end stage renal failure within 25 years. If you have persistent proteinuria/haematuria or a high creatinine at the time of diagnosis, these are poor prognostic signs.
I had a severe case of this when I was 39 years old, so I wouldn't say it's solely a childhood affliction. It was quite an unpleasant few months as I suffered with it.
@@ahmedaljanabi4135 One thing I remember was being prescribed a cream to apply to the affected areas, but I can't remember what it was. It was almost nine years ago now.
I had this back in 2016. I was 21. It was absolutely awful and I had to be hospitalised for about a month. I had all the mentioned symptoms. I was prescribed steroids which did the trick!
I'm 30 and started itching a week ago. Next day some itchy red spots on body appeared that I thought were bug bites. Next day got more. Next days more. Spread to back, biceps, quads, legs. Finally went to doctor and got prescribed just 5 days worth of prednisone. Don't think the spots will disappear until 2 weeks from now, I imagine. My legs and biceps look like the purpura.
I had a severe case of HSP from age 15-30 on & off. The rash blanketed my limbs + blood in my urine. It was usually brought on by a chest infection. Dr’s said i was lucky that my kidneys were not affected. It was scary.
I had this when i was a kid, back in 2010, the rashes are the worst, all over the body and they itch like hell. Then a few days in, stomach ache kicks in, and it's the worst pain I've ever felt. Joints hurt as well, so much that you don't want to move any of your joints. It really fucking sucks, and i hope anyone that has it, gets better real soon.
I had this when i was 8 or 9 in 2002, im 27 now. I remember the doctors couldn’t figure out what was wrong with me for a couple days, but there happened to be a group of doctors that just learned about it. I remember the stomach cramps being insane, and my mom had to carry me to the bathroom cause i didn’t have enough strength to walk.
I have exactly the same story as you… they’ve send me home a couple of times because they don’t know what it was. The stomach cramps was the worst pain i’ve ever felt in my whole life.
My doctor needs to listen to me. Had an NP say my purpura looked like razor burns. I was advised to schedule an appointment during a flare up. Waited a week for my appointment. And by that time my severe purpura was starting to clear up. I showed her pictures of it inflamed and she said oh yeah that’s definitely not razor burn..... well thanks. I feel this is my internet given diagnosis
my doctors first though i got into some grass and got an alergic reaction... and my other sympthoms were blamed on puperty :P (sweating like a freak, breathing problems, being always super sleepy)... when I did finally get an appointment b a secialist.. my rush was gone.. so they send me back home saying.. it was an alergy as it is gone now... somehow nobody ever came across this disease... so it was hard to get anyone to look deeper.. untill it got worse... but no blame on them... also it went super fast downhill.. 3 months and my body was.... half dead :P but hey... 17 years later.. i'm still here XD
had multiple relapses of this as a kid lasting multiple months. doctors and school thought i was being dramatic or faking (as if you could fake a rash or blood in urine as a little kid). never got any treatment. wasn’t until my little cousin got diagnosed about a decade later they made the connection.
I had this really bad when I was 19. I had arthritis pain so bad I couldn’t walk or move for a few months straight. Then came the vomiting. I was already a skinny kid at about 130lbs, but I shriveled away to about 90lbs until they finally admitted me into the hospital. This was back in 2005, and I remember doctors taking pictures of the rashes on my body with their flip phones. It was hell for me and the arthritis still persists for me.
I had this disease when I was 5-7 years old and I suffered a severe case for 3 years. It came and went in waves but when I was around 6 years old, I started having internal bleedings and almost a kidney failure. I remember spending those 3 years almost every night in the hospital. Not a fun illness to have
Me too. Got this aged 3. Went away with antibiotics. Aged 11 I almost died from kidney nephritis. Steroids cleared it. Now aged 29 and I have weird vascular symptoms that make my feet red purple and cold, red patches in eyes and dermatitis and skin itches. But no diagnoses.
Had this as a 7yr old along with intussuception of the bowel. Had reoccurences aged 26 and 42,both unknown causes. 26yr of age suffered badly with Arthritis,particularly in my hand and wrist. On all occassions the rash persisted for at least 6 months.
When I was about 7 I was given corticosteroids to help mitigate my HSP once it got to the point where I had sepsis… the corticosteroids attacked my pancreas and now I have type one diabetes. I sometimes wonder if this could’ve been prevented or something done differently where I wouldn’t have t1d
My daughter was just diagnosed with this yesterday I have never heard of it and now I'm petrified!!! She's doubled over in stomach cramps in the purpura is slowly climbing up her trunk now... Has has anyone here had kidney involvement?? How bad was it and what was the treatment if the kidneys are involved?
Hello. My son had/has it but the only symptom he had was the one large purple spot on his left hind leg. At fist it was palpable but after I changed soaps, the elephant like skin receded but the purple spot remained even though it has cleared somwhat. Ah yes and skin ulcerations all over his arms and legs and lower cheeks. It never seemed to affect him as he went about his business as a kid playing and running. He even went to preschool. Ah yes the skin ulcerations were itchy. It seems it's in the past but after watching this video, I realized there could be internal factors so I'm gona get all those lab test done. How'd it go for you? Looking forward to reading your reply. Blessings.
My partner, 31 M have this now. He was confined for almost 3 weeks and it affected him badly. Currently his kidneys are mainly affected by it and has lots of laboratories and mwdications 😭
I got this disease for the first time when I was 17 years old. Lasted more than 2 months. Then came again 2 times in 3 years. I also experienced severe stomach pains and vomiting along with red dots on my legs. Then came again after many years. Only the dots on the legs took a long time and got better in 1 month. Now I am 32 years old. I'm struggling with this again. The red dot has come again on the leg.
I got hsp when I was 10 and when I got that I felt my old life slip away. After I got better I had chronic fatigue and still have it but to all how have it. To all that have it it gets better may not be as good as you like it but it gets better
My 3 year old has just been diagnosed with this, we saw red blotchy rash on her legs in the morning and within an hour it had covered her legs, very scary. Feel so helpless for her
How is your 3 year old now? My 4 year old was diagnosed with it 2 weeks ago and just had surgery for intersusseption yesterday. His so weak and wonder what the journey ahead will bring.
@@jenndob3865 intersusseption is where the intestine folds in on itself from the swelling and can cut off blood supply to the bowel aswell as cause a blockage :( My boys fine now though 🙌
I suffered from HSP for 8months and it felt like hell, standing and walking makes it worst will get a lot of joint pain and bruises with vasculitis rash.. The only medicine my doctor gave me is colchicine and vitamin D.. it did help and it went away for 2 months and then later on it came back worst with new other symptoms and I was later on diagnosed with Lupus Nephritis
Im having this since i was 16 yo and now im 24 yo but still it come and go within 3-6 months intervals. It usually lasts for 2-3 weeks. Abdominal pain was horrible cant even sleep at those days. 😌🤧😪
@@amywei1330 I've taken penicillin for 6 months continuously but HSP strikes again so, I just stopped taking penicillin as it not so good for health. Now im going with homeopathy which is i think effective. Cuz the intensity and duration of symptoms has been reduced. I'm feeling better now but this has to end 😌
I 22 years old , I have the sickness for 4 years! And still I live with this I even was in hospital but they didnt help me , i have this on my legs and arms and is red big red spots they only given me drugs called DAPSON and because of this my liver is bigger Purpura and henocha is the diagnose and what thing should i do to let this away! 4 years of pain my dream is this to end!
I have had this disease for a year and a half and have been admitted to hospital almost 30 times due to pain and rash flareups and also swelling. The only thing that keeps the rash away is prednisone and I take oxycodone everyday which only takes the edge of it. We live in a fallen and broken world and by the grace of God I know it will all come to a end and through JESUS I will have eternal life with no pain or sickness. What gets you through life?
@@servantofchrist2378 My familly I have parents sister cousins and girlfriend she is famous and she also trying to out this disease . We dont know what to do 5 year is now and only prednisolone and my doctor said to much cause liver problems and no more meat eating feels angry at it . 😪
@@arsenmikha1892 yesh becz cholesterol thicken the blood if you have normal reports of kidney and urine and Ana test check your cholesterol and uric acid bcz high cholesterol cause vesseles narrow and heart circulation problem
I had this at age 3. Treatment cleared it up. 8 years later I got sick and had nephritis of kidneys and was on steroids.almost died, steroids cleared it. Years later at age 29, inow have weird vascular symptoms of red blue feet, small red patches in eyes and red patch on lip and flushing of the face. But no diagnoses being made..
I had the same effects. I was walking home from school with my younger sister. My legs ended up locking up where she had to drag me the rest of the way I was 8 or 9
You forgot in the severest of cases it can affect the heart lungs liver and stomach. I should know cuz I had it when I was 15 and was just a few days from dying and there was no time for steroids so they used chemotherapy to almost kill my immune system
My sister also has a disorder like that but she feels burning through her skin whenever it appears and it’s been 3 years sometimes it disappears but then appears again , it involved her kidney too she uses steroids for that
I had such a bad case of this at 13, no one knew what it was. My rash was so bad, they treated me for staph infection. I got a kidney disease from this, called it’s iga Nephropathy. It’s horrible
@@dr.Daniyalmustansar bhai Apka bhi hua tha Kya??? Bhai muje hua hai 2 months Hoagaya lekin abhi tak thik nhi hua steroids bhi chalu hai lekin Koi farak nhi pad rha condition getting worst pls can u help me??
I had it when i 6, i am 29 now. Didn't have any recurrence of the disease in all these years. But my immune system is weaker as compared to anyone with a similar lifestyle as me. I was on steriods as a part of the medication. Don't remember the names but steriods tend to leave a long lasting effect on your body. Haven't had any serious health issues.
Im 36 year old male. I got HSP NO Renal involvement.. But still the purpuric patches are repeated if i work for several hours.. all started more than 5 weeks now
Sadly to say, I would not recommend physical activity. I had a server case of HSP when I was 19. In my case, it was dangerous to put my legs below my heart. Gravity would bring blood to my legs and cause the lesions to worsen. Physical activity would also raise my heart-rate and pump more blood, causing the disease to spread. I'd recommend elevating legs above the heart, and try to calm the mind. Stress hurts the body. Wim Hof breathing techniques helped me a lot
Can someone check my red spots on my ankles? I'm not sure if i have this HSP condition or what. Red spots on my ankle started to grow and spread up to my legs but the growth is slow. But now it started to move again and some spots are getting bigger. Please help.
Buna ! Fetia mea are ,sunt într-o stare grea nu stiu ce sa fac a fost internată,si a recidivat dupa 4 zile de stat acasă cu dureu de cap, dureri de burtă! Ce analize sa fac ! Va rog un sfat sunt fooarte îngrijorată 😔🙏🏻
എനിക്കും ഈ രോഗം വന്നു. തുടക്കം തലവേദ ആയിരുന്നു അതിന് ശേഷം വയറുവേദ വന്നു പിന്നെ കാല് ചൊറിഞ്ഞു തടിച്ചു. ഗ്യാസ്ട്രോളജി , ഡർമിടോളജി, മെഡിസിൻ ഇവിടെ മൂന്ന് ഇടത്തും കാണിച്ചു. ലാസ്റ്റ് ഈ രോഗം ആണെന്ന് സ്ഥിതികരിച്ചു. രണ്ട് ആഴ്ച കഴിഞ്ഞാണ് രോഗം പൂർണമായും മാറിയത്. സ്റ്റിറോയിടിന്റെ ഗുളിക കഴിച്ചതിന് ശേഷം ആണ് ശെരിക്കും മാറി തുടങ്ങിയത്
I was diagnosed about a year and a half ago at the age of 40 with hsp. It took what seemed months for the doctors to figure it out and that was through a kidney biopsy. Once diagnosed I was put on cyclophosphomide a type of chemo to stop my immune system but it failed and now I am on prednisone daily along with oxycodone for pain. I am also on 3 different high blood pressure medications and still my BP sits around 160/100. It's not uncommon for my blood pressure to sit around 180/110 consistently. This has been the biggest battle of my life and without my faith in JESUS CHRIST, I honestly can say I would have committed suicide months ago as I suffer from other underlying ailments because of the disease. Death comes for us all but in JESUS their is eternal life and no more suffering. No sickness and no pain. I can't wait
Ive had this for over a month now and had to be hospitalized due to it spreading to my kidneys and intestines. The symptoms keep coming back and it looks so terrible, I cant wear half the clothes I used to. I wish anyone else dealing with this a quick and safe recovery
I used an ipad pro with procreate. I record the screen of the ipad, then use a mac to edit the video with final cut pro. one day I will make a video to explain the process
I have been diagnosed with HSP about a month and a half ago and I'm afraid of it coming back.. Did any one else's bump / ulcers on their legs start to heal but the red dots come and go from under my belly.. I'm scared to take my medication because I don't know if it will actually help me, its called Doxycycline Hyclate. If anyone can pls help?
My daughter was recently diagnosed with Henoch-Schönlein Purpura and it broke my heart seeing her having a hard time walking and seeing the rash all over her legs. It even spread to her face. I'm glad I ran across this video because it just seemed like the doctors here didn't care about what was going on. She now has a referral to a nephrologist and a dermatologist so please pray for us that we can get this under control. 💕
I'm so sorry to hear about your little one. i hope she feels better soon xx
If it makes you feel better i had hsp when i was 9
I once under hsp when I was 10 and it was truely a nightmare . But I gone throgh it and it took me about 2 months treating . No recurrence until now and I’m so cherish for that . Hope u and your little girl be brave enough to face it . After rain comes sunshine 🦾🦾
She’s going to get better, I was diagnose 19 years ago, when I was 6, and the 3 following yrs it was controlled with steroids, a fact is that usually ppl get fatty by taking steroids but just for few years
So sorry to hear about your daughter, how I she now ?
My 5 year old was just diagnosed. I had so many questions that are here clearly answered. Thank you for putting this together.
I also suffered from his hellish affliction 2 weeks before Christmas of 1997. I was 16 yrs. old and a sophomore in high school. The first sign I knew something was very very wrong was the most intense stomach cramps alongside recurring abdominal stabbing pains. After 2 nights of the pain increasing over that duration I was in such pain I had to sit doubled over grasping my legs as to almost crush the stomach cramps away. This is when I started seeing a great deal of blood in my very very loose stool and the time I would finally go to the ER. At the hospital they assumed it was solely my appendix. So it was removed. Initially I felt much better with the aid of hefty narcotics. But within a week I was right back where I started, doubled over in pain and at the ER. Only this time I was not just admitted to the hospital. I spent over a week there in quarantine as doctors had no idea what was causing my symptoms. However, I had been trying to tell the doctors about the purple spots that were now covering my thighs and buttocks that weren’t raised, but flat and had a hot ashy feeling. That’s the best way I can describe what they felt like. Eventually they spread all the way down to my feet and up to my forearms. While in the hospital I was only having my pain managed. Thankfully one day my dermatologist just happened to be walking down the hall of the hospital and my mom stopped him and asked if he could look at my spots. He had a biopsy done immediately. And the next day or so they finally were able to diagnose me with HSP Vasculitis. I was put on high doses of prednisone and started to see a great decline in my pain as well as a drop in the amount of spots covering my body. Eventually I’d start seeing a rare disease and rheumatology doctor who would add methotrexate to the prednisone I was already taking. I started feeling much better over the next several weeks. But would still suffer these reoccurring bouts with intense abdominal pains. This would go on for another year and a half. And I had to stay on the two medications for approximately 3 years total. The whole thing was a nightmare. And I wish anyone currently suffering from this horrible affliction a speedy recovery.
I have this disease, too. Actually, in 1998. It is reoccurring, and I cant get immunizations as an adult. When I was pregnant with my daughter I got the TDAP shot, and it actually ended up with dangerously low blood platelets and high white blood cells. When I had my son, the doctors at the big hospitals knew what to do, and I had medication and blood transfusions. I have arthritis as an adult, which never went away from when I acquired this as a child.
I never met anyone else who had this disease. Take care fellow hsp friend.
Sorry you went through that man! I had HSP for about 3-4 months back in 2012 when I was around 9.
I had hsp when I was about 8, 1994, and was told to ecpect to die overnight- assumed blood infection. I spent 4wks in the hospital and developed very bad knee and ankle pain that continues to this day. Hellish for a kid and scared the crap out of me, an 8yo, being told I was going to die and my folks on the verge of a breakdown for the same reason
I already visited 5 doctors and all of them say this disease is incurable. Please if you know what medicine you took I'll appreciate. I'm considering suicid3
@@Metanol_man dude i had this disease and am fine now....just go to your doctor and ask for help dude... please don't give up .....all of ua who are cured now didn't give up.... you'll be fine dude ....i love you .
I've just had HSP for about 6 months, from Nov 2021 to May 2022 (I'm 26). The way this disease destroyed my self-confidence and had my lifestyle change drastically was really hard. I didn't go out of my house for over 60 consecutive days because the doctors thought the purpura might worsen from standing up/walking too much due to increased blood flow to the lower limbs, which is up for debate at this point now that they finally diagnosed me. This disease for me has been more of a mental challenge than anything else. I hope so deeply it won't come back.
Its mean u didn't get it again
U never got it again
@@humairaakbar5191 No, it hasn't come back. I'm incredibly glad! Although it did relapse several times during that period. Seemed like it was healing, then new stains appeared all over, two or three weeks later, four of five times over several months. Flare-ups came in batches. Today I'm still having some side effects from taking prednisone for a long period: my immune system hasn't completely recovered from the high dosage I took and now I have adult acne because my skin can't defend itself as well against bacteria since then.
@@wisterio.musicgeek from where u are and are u married and it affects your physical activity or not and alt that time can u walk
🙏🙏🙏🙏🙏🙏🙏
I still have this now and its been 3 months going to 4th month of medication I kinda get lonely sometimes because I cannot wear shorts anymore in outside places , Praying for all the people here who still have this that we cab through it! Glad to see comments here I kinda find a community in here
I do 😢
I had this when I was 7 and it last pretty hard-core for only 2 years if I remember correctly... I'm 40 now and seem healthier then most of my friends... hope it helps
It's been a year and after a long medication and series of check ups I just want to update all you that I already recovered from this and I can wear shorts again ☺️ Hoping everyone who still has this will be strong to conquer this journey ❤️
Ohhhh, so sorry 🙏🙏🙏🙏🙏🙏🙏
Praying your medication works. My grandson’s kidneys can’t process phosphorus. They are giving him medication that bonds with it to get it out of the body.
I had this purpura thing a long time ago and actually, I can't remember anything, I just know I was in the hospital and my mum was crying. So today I randomly decided that I'm gonna find something about it. Thanks for the video.
I love your curiosity.
I had purpura fulmens I think it's called
@@beautilfuldoveonearth5447 HSP/ Henoch-Schonlein Purpura. Autoimmune disease. Targets Blood vessels and capillaries all over the body, including skin, organs, gastrointestinal tract, and joints. Causes a bruising and rash.
@@morningmorgan6341 does it get cured? What I had was gone after I went to the hospital. I had bleeding under the skin.
Hello, I also have HSP since 1 month ago. and is still ongoing. although I don't know how it started. and when will it end. if i may know, are you healed now? how long have you been through that time?
My son was diagnosed with this last year. He seems okay now, but at the time the GP had no idea about the illness. I love your channel! Thank you!
Glad he's better. Great to hear you like the channel
This video was very helpful! My daughter is 7 was just diagnosed with this, terrible leg and knee pain she couldn’t walk along with the purpura which led us to the ER
My 5 year old granddaughter is going through this right now. She is having a kidney biopsy tomorrow. Anyone who reads this , please say a prayer for my Verra
I pray for all childreen to recovery this
if you're reading this and you suffer from HSP right now, here's what i think you should do: rather than asking for immunosupressant drugs which is always a risk in itself, 1. start intermittent fasting as well as 48 hours of full fasting a week, and 2. go on a hypoallegric diet. exclude every food that can cause allergies until the rash/pain disappears. that leaves you with: all meat, buckwheat, rice, some mushrooms, cabbage, cucumber, butter or ghee, peas. don't eat anything with emulgators or precooked, cook your own meals, and heatig them is better than raw.
once/if the symptoms subside, the tedious part is reintroducing all other foods one by one. first week try diary, second try fish and shrimp. and so on until you find something. even if it's nothing. even if you end up not having an allergy after this (which is very lucky). and if you see a reaction, immediatelly go back to the fast and the save diet again and write down what caused it.
i personally think HSP is triggered by gluten. in my journey i had to exclude bread and wheat products. granted i still eat them, this isn't crohns and not an actual allergy, but i am very careful and "respectful" of gluten now. i really don't want to be immobile and swelling every day in a new place again.
goes without saying but dont strain your immune system. wear scarfs and no swimming in cold waters. good luck and i'm praying for you.
I got a pretty severe case of this a few years back at 35 yo. First the rashes appeared but I wasnt able to self diagnose until a couple days later when abdominal and joint pain came into the mix. After a stay in the hospital it was confirmed but no treatment (steroids, cortizone, etc) helped one bit, until I discovered a medical paper touting the effects of Colchicine. Doctors and I were both sceptical but I tell you it worked almost immediately. Joint and GI issues became nearly nonexistent and the vasculitis started clearing to almost nothing in a couple weeks.
A couple warnings, though. First, you cannot drink alcohol with Colchicine, period. I'm a heavy drinker usually and I threw up violently while mixing the two, after a minimal amount of booze.
Second, if it does work for you do not stop treatment until the Rx is over and the rash is gone, or it will come right back.
Thanks for the informative video, and blessings to you all.
Hi, I’ve found binge drinking to be the cause in adults, how are you doing at the moment?
My son Was 5 when he had this during a school farm visit. I was a helper and he was steadily becoming slower walking and complaining he couldn’t walk. Then after his lunch he couldn’t stand up. I looked at his legs-big red blotches! I took him straight to hospital. The following weeks he often peed pure blood. Very scary. But he recovered fine and hopefully no long term affects.
An absolute nightmare. My son got it at 5 too and now he's six and still has stabbing abdominal pain.
Give me your number sir urgent
Please give me your number sir my son also affected now
This lecture is for medical students and Doctors not for ordinary people,thanks zero to finals for this nice presentation
So.. "ordinary people" shouldn't know this? Interesting point of view. I hope that as a doctor you will never be let loose on patients...
@@hermannschaefer4777 they should,but they have nothing to do with pathophysiology
Amazing explanation of the disease. Connect all the dots together.
Bless you, my friend
my son 10 years old is suffering with hsp, from 14 days, he is having rashes all over the body, swelling in feet, suffering from pain, iam praying to God, please all of you pray for him to reduce soon
i am only 13 years old and i sufer from this. i’ve had it for the last 3 months. please pray for me as i fight this battle.
Are you okay now ?
Its gone ?
I feel for you! I had it was I 6. The test and treatment is something I’ll never forget. I’m going to pray for you!
i've never understood this disease well, thank you for this
I have had this illness for 4 months now. I was under the impression I was healing, and bouncing back because the ulcerations all over my legs are healing and I can walk again. We’ve started to taper me off the steroids.
Today they called about my renal biopsy and the disease is still active in my kidneys, and have done a lot of damage. They’re not exactly sure what the next step is, maybe a 3 day stay for a high dose IV steroid.
You take health for granted. It’s random. We don’t appreciate the basic things in life enough. Just being able to walk. To not be in pain. To not constantly have SOMETHING wrong with me.
I hope you finally got rid of this nasty bug.
I feel you, I have this disease for almost 2 years now….
@@TheSageDuchess me too hope bro all is well 🥰🥰
@SageDuchess I thought it goes away after a few months. My son has been carrying thus bug for almost a year now
@@MegaCocoa11 I feel like there is a lot unknown about this certain disease. If your version differs from the textbook one, doctors seem lost on what to do (next). Atleast, here in my country (NL). It is a extremely frustrating, scary and life changing disease because of this. Sending lots of love and strenght to you, your boy and all the involved. It’s not easy to have this disease, but it’s also not easy to watch someone you love be in so much pain, discomfort and fear 24/7 and being able to do absolutely nothing to help them.
My son was diagnosed today. So here's to our HSP journey.
Menimde qizimda bir ay qabaq hemorrogik vaskulit diaqnozu qoyuldu cox pisem 😥umid ediremki tam sagalar qizim sizin oglunuzda o cumleden
How is he now?
Praying for you! I had it when I was 5-6 years old
Diagnosed with this last April. Rash started first. Then my joints to where I couldn’t walk. Feet & hands swelled up. Abdominal pain & throwing up. Spent 6 days in the hospital. Lost 40 pounds. Took 6 weeks to recover. 60mg of prednisone for weeks finally made a difference. Still dealing with the kidney issue. High protein & blood in urine. I wouldn’t wish that experience on anyone. Especially children!
How old u are
@@humairaakbar5191 34
This sounds almost exactly like my case. I'm going on 3 years now. I'm actually starting to have another outbreak as I'm typing this. How is your case going? I can't afford the bill for specialists, and my insurance won't cover it because I can't afford to meet my deductible. I now have a baby on the way, and it terrifies me that it's possible for it to end in kidney failure. Have you noticed any triggers? I haven't connected the dots yet.. but I have noticed that my worst flare-ups have been in cold weather. A low inflammation diet helped tremendously, but now I'm traveling for work, and it's hard to stay on a diet.
Children shouldn't have to go through these types of things. So sorry.
I suffered from hsp when i was 6, i am now 29. it started with a little fever, the fever went away after a few days but then my knees and ankles started swelling suddenly with sever pain, making it difficult for me to walk. I clearly remember the swelling started while i was sitting in a Mcdonalds with my mom and brother. And after a few hours i couldn't walk by myself. I had been complaining about a little pain in my ankles that morning. We came back home with everyone worried sick because my legs were swollen and my stomach started hurting. The hellish pain continued. I still get chills when i remember the pain. It started getting worse as there was constant pain in my abdomen and my legs and i lost my appetite and started throwing up very frequently. Mind you this was in the year 2000. My parents took me to so many doctors, no one could figure out what was wrong. I started having red spots on my lower body, back and arms and i was taken to a hospital. I was at the hospital for 3 days which felt like weeks. I went through series of tests and finally the doctors had an answer.
My family was so worried sick during that time. When i got older my mom told me about how scared everyone was and didn't know how to ease the pain i was in. I would murmur in my sleep because of the abdominal pain.
It was on bed rest for a few months as the doctor told them that i should not have any type of physical trauma. I didn't go to school for 4 months. I wasn't allowed to play outside with my friends for those 4 months too. I hated the medicines i was on. I hated that my parents had to be on the look out for any recurrence of the disease. I have always loved henna on my hands even as a child. I was not allowed to get it done for more than a year. All because everyone had to be on the lookout for a recurrence.
Thankfully it did not recur. But the entire experience was horrible for me and my family.
I recently read something about bleeding disorders and decided to know more about what happened to me.
It's have anylongterm effect
My god! I was diagnosed in 1996 and have looked up stuff on the internet from time to time. Your comment hits home to me more than anything I’ve read before
I hope you have completely recovered now dear
@@AbhishekSingh-ui2nu i don't have the best immunity. I get colds easily. Some allergies i developed over the years. But nothing that can be managed without medicines.
@@nickmason2345 it must have been difficult for you too. I hope you recovered fully
I have this HSP for about a week now, I hate seeing my skin all purple and red especially all over my body and having to worry about if I ever will go back to normal again. I wouldn’t wish this on anyone at all, it really is the worst experience ever
The best channel ever I seen...
i was diagnosed with HSP like a month ago, it became better but now it came back, it's hard not to do things you are used to because you need to rest a lot but at the same time you don't really feel that ill, it's weird
Is it gone now?
I have same issues like you and I don't know when it will go away
Is yours gone now?
Many thanks for this video. I would add re the prognosis in HSP- IgA nephropathy progresses quite slowly. Only half of patients will have end stage renal failure within 25 years. If you have persistent proteinuria/haematuria or a high creatinine at the time of diagnosis, these are poor prognostic signs.
Thanks for the info.
Great video. Only high-yeld contents. No filler.
My youngest child has it now, I'm worried, but hopefully everything is gonna be alright. 🙏🏿
I had a severe case of this when I was 39 years old, so I wouldn't say it's solely a childhood affliction. It was quite an unpleasant few months as I suffered with it.
please what did you do to treat yourself ?
@@ahmedaljanabi4135 One thing I remember was being prescribed a cream to apply to the affected areas, but I can't remember what it was. It was almost nine years ago now.
I had this back in 2016. I was 21. It was absolutely awful and I had to be hospitalised for about a month. I had all the mentioned symptoms. I was prescribed steroids which did the trick!
@@auhsz9140 check your cholesterol and uric acid
@@dr.Daniyalmustansar I had lab work done recently. Everything was fine! :)
I'm 30 and started itching a week ago. Next day some itchy red spots on body appeared that I thought were bug bites. Next day got more. Next days more. Spread to back, biceps, quads, legs. Finally went to doctor and got prescribed just 5 days worth of prednisone. Don't think the spots will disappear until 2 weeks from now, I imagine. My legs and biceps look like the purpura.
@Boba Fett Yes. The prednisone slowly worked (within days the red spots began to subside and be less red until they went away)
@Boba Fett No. Thankfully.
Are you considering using prednisone?
Hi I had the exact same situation and it's been 2 years since I've suffered HSP. How are your spots now? Does Prednisone really work?
@@queenierosedurano9570 Yes, prednisone worked for me, thankfully.
Hopefully it (or something else) works for you too.
I had a severe case of HSP from age 15-30 on & off. The rash blanketed my limbs + blood in my urine. It was usually brought on by a chest infection. Dr’s said i was lucky that my kidneys were not affected. It was scary.
Mitől múlt el?
My grandson is 8 yrs old and was just diagnosed with this HSP disorder.
It's so heart breaking 💔 to see him struggle to walk.
I had this when i was a kid, back in 2010, the rashes are the worst, all over the body and they itch like hell. Then a few days in, stomach ache kicks in, and it's the worst pain I've ever felt. Joints hurt as well, so much that you don't want to move any of your joints. It really fucking sucks, and i hope anyone that has it, gets better real soon.
@@wnihaunter3943 have you Fully recovered?
Once again: excellent. Thanks a lot.
I am honestly enjoying this. Thank you tonnes
I had this when i was 8 or 9 in 2002, im 27 now. I remember the doctors couldn’t figure out what was wrong with me for a couple days, but there happened to be a group of doctors that just learned about it. I remember the stomach cramps being insane, and my mom had to carry me to the bathroom cause i didn’t have enough strength to walk.
I have exactly the same story as you… they’ve send me home a couple of times because they don’t know what it was. The stomach cramps was the worst pain i’ve ever felt in my whole life.
this was very helpful. My bf has it so I watch this so Ik what might happen and to do the best I can
My doctor needs to listen to me. Had an NP say my purpura looked like razor burns. I was advised to schedule an appointment during a flare up. Waited a week for my appointment. And by that time my severe purpura was starting to clear up. I showed her pictures of it inflamed and she said oh yeah that’s definitely not razor burn..... well thanks.
I feel this is my internet given diagnosis
my doctors first though i got into some grass and got an alergic reaction... and my other sympthoms were blamed on puperty :P (sweating like a freak, breathing problems, being always super sleepy)... when I did finally get an appointment b a secialist.. my rush was gone.. so they send me back home saying.. it was an alergy as it is gone now... somehow nobody ever came across this disease... so it was hard to get anyone to look deeper.. untill it got worse... but no blame on them... also it went super fast downhill.. 3 months and my body was.... half dead :P but hey... 17 years later.. i'm still here XD
had multiple relapses of this as a kid lasting multiple months. doctors and school thought i was being dramatic or faking (as if you could fake a rash or blood in urine as a little kid). never got any treatment. wasn’t until my little cousin got diagnosed about a decade later they made the connection.
I had this really bad when I was 19. I had arthritis pain so bad I couldn’t walk or move for a few months straight. Then came the vomiting. I was already a skinny kid at about 130lbs, but I shriveled away to about 90lbs until they finally admitted me into the hospital. This was back in 2005, and I remember doctors taking pictures of the rashes on my body with their flip phones. It was hell for me and the arthritis still persists for me.
U never got it again
Wonderful informations, as always👍
Thank you!
Very good and detailed video! Thank you
I'm from India,I wish that ur books become easily available here too..
PS.kindly upload more videos soon
I wish they were too! More coming soon
I had this disease when I was 5-7 years old and I suffered a severe case for 3 years. It came and went in waves but when I was around 6 years old, I started having internal bleedings and almost a kidney failure. I remember spending those 3 years almost every night in the hospital. Not a fun illness to have
Me too.
Got this aged 3. Went away with antibiotics.
Aged 11 I almost died from kidney nephritis. Steroids cleared it.
Now aged 29 and I have weird vascular symptoms that make my feet red purple and cold, red patches in eyes and dermatitis and skin itches. But no diagnoses.
Mulțumesc frumos pentru informații!
Had this as a 7yr old along with intussuception of the bowel. Had reoccurences aged 26 and 42,both unknown causes. 26yr of age suffered badly with Arthritis,particularly in my hand and wrist. On all occassions the rash persisted for at least 6 months.
The end part of the video is scary 😧
Hi, very nice video but correct me if I’m wrong, I think IgA nephropathy can lead to nephritic and not nephrotic syndrome as mentioned in the video.
When I was about 7 I was given corticosteroids to help mitigate my HSP once it got to the point where I had sepsis… the corticosteroids attacked my pancreas and now I have type one diabetes. I sometimes wonder if this could’ve been prevented or something done differently where I wouldn’t have t1d
Most times doctors just make some lucky guesses when it comes to illnesses they don't know much about making the future outcome bad.
Man that sucks
My daughter was just diagnosed with this yesterday I have never heard of it and now I'm petrified!!! She's doubled over in stomach cramps in the purpura is slowly climbing up her trunk now... Has has anyone here had kidney involvement?? How bad was it and what was the treatment if the kidneys are involved?
Is your daughter okay now? I had this when I was 9, and was better after a month with no recurrence since. No kidney issues (I’m 41 now).
Hello. My son had/has it but the only symptom he had was the one large purple spot on his left hind leg. At fist it was palpable but after I changed soaps, the elephant like skin receded but the purple spot remained even though it has cleared somwhat. Ah yes and skin ulcerations all over his arms and legs and lower cheeks. It never seemed to affect him as he went about his business as a kid playing and running. He even went to preschool. Ah yes the skin ulcerations were itchy. It seems it's in the past but after watching this video, I realized there could be internal factors so I'm gona get all those lab test done. How'd it go for you? Looking forward to reading your reply. Blessings.
This fucking sucked. I lost an entire summer because of this when i was younger. I hope everyone affected recovered as well as I did.
My partner, 31 M have this now. He was confined for almost 3 weeks and it affected him badly. Currently his kidneys are mainly affected by it and has lots of laboratories and mwdications 😭
I got this disease for the first time when I was 17 years old. Lasted more than 2 months. Then came again 2 times in 3 years. I also experienced severe stomach pains and vomiting along with red dots on my legs. Then came again after many years. Only the dots on the legs took a long time and got better in 1 month. Now I am 32 years old. I'm struggling with this again. The red dot has come again on the leg.
Are u better now
I got hsp when I was 10 and when I got that I felt my old life slip away. After I got better I had chronic fatigue and still have it but to all how have it. To all that have it it gets better may not be as good as you like it but it gets better
I hope that you will turn all the listed diseases in your books into videos. This is great, just ordered your books. TY
That's the plan ultimately! Soon I should have the time.
I was suffered from this Disease
Too bad days of my life...
My 3 year old has just been diagnosed with this, we saw red blotchy rash on her legs in the morning and within an hour it had covered her legs, very scary. Feel so helpless for her
I’m so sorry to hear that
How is your 3 year old now? My 4 year old was diagnosed with it 2 weeks ago and just had surgery for intersusseption yesterday. His so weak and wonder what the journey ahead will bring.
@@jasonmayes3831 what's that!!
@@jenndob3865 intersusseption is where the intestine folds in on itself from the swelling and can cut off blood supply to the bowel aswell as cause a blockage :(
My boys fine now though 🙌
My daughter is currently having this and honestly it's giving me a lot of anxiety. She's only 2 years old
How is she now?
I suffered from HSP for 8months and it felt like hell, standing and walking makes it worst will get a lot of joint pain and bruises with vasculitis rash.. The only medicine my doctor gave me is colchicine and vitamin D.. it did help and it went away for 2 months and then later on it came back worst with new other symptoms and I was later on diagnosed with Lupus Nephritis
I actually got this hellish disease and it just went away on it's own after several weeks...But i still have this doubt, does it come back again ?
I had this as a kid, I was in the hospital for 3 months straight. I was ok the verge of death, worse time of my life
Im having this since i was 16 yo and now im 24 yo but still it come and go within 3-6 months intervals. It usually lasts for 2-3 weeks. Abdominal pain was horrible cant even sleep at those days. 😌🤧😪
When this replased,did you take medication for it?
@@amywei1330 I've taken penicillin for 6 months continuously but HSP strikes again so, I just stopped taking penicillin as it not so good for health. Now im going with homeopathy which is i think effective. Cuz the intensity and duration of symptoms has been reduced. I'm feeling better now but this has to end 😌
@@JeevanJoy da eth enikku kazhinja 2022 april vannu eppo 9 month aayi red dots nadakkubbozhum kaalu thooki edubbozhum varum eth eppozha maarukka 😑😑
@@mub1634 1st time aano vannath?
@@JeevanJoy athe 🙂
I 22 years old , I have the sickness for 4 years! And still I live with this I even was in hospital but they didnt help me , i have this on my legs and arms and is red big red spots they only given me drugs called DAPSON and because of this my liver is bigger Purpura and henocha is the diagnose and what thing should i do to let this away! 4 years of pain my dream is this to end!
I have had this disease for a year and a half and have been admitted to hospital almost 30 times due to pain and rash flareups and also swelling. The only thing that keeps the rash away is prednisone and I take oxycodone everyday which only takes the edge of it. We live in a fallen and broken world and by the grace of God I know it will all come to a end and through JESUS I will have eternal life with no pain or sickness. What gets you through life?
@@servantofchrist2378 My familly I have parents sister cousins and girlfriend she is famous and she also trying to out this disease . We dont know what to do 5 year is now and only prednisolone and my doctor said to much cause liver problems and no more meat eating feels angry at it . 😪
This was really helpful. Thank u so much
Amazing as always
Thank you!
Amazing explanation ❤️
thanks
so sad to say, i hv diagnosed of this HSP 😔 How to worked out wh this ?
if you have hsp check your cholesterol and uric acid
@@dr.Daniyalmustansar Is tht relate to HSP if i hv high cholesterol n urid acid?
@@arsenmikha1892 yesh becz cholesterol thicken the blood if you have normal reports of kidney and urine and Ana test check your cholesterol and uric acid bcz high cholesterol cause vesseles narrow and heart circulation problem
@@arsenmikha1892 Avoid oily food and meat chicken eat more fiber and vitamin c
@@dr.Daniyalmustansar i c...thks so much frd 🙏♥️
i hv followed the doctor test, the result was my kidney n urine are normal .
A very good descriptive video
I had this at age 3. Treatment cleared it up.
8 years later I got sick and had nephritis of kidneys and was on steroids.almost died, steroids cleared it.
Years later at age 29, inow have weird vascular symptoms of red blue feet, small red patches in eyes and red patch on lip and flushing of the face. But no diagnoses being made..
I had hsp, and i was paralysed from the neck down because of it. I was shocked to learn some people have no effect other than just a rash!
I had the same effects. I was walking home from school with my younger sister. My legs ended up locking up where she had to drag me the rest of the way I was 8 or 9
You forgot in the severest of cases it can affect the heart lungs liver and stomach. I should know cuz I had it when I was 15 and was just a few days from dying and there was no time for steroids so they used chemotherapy to almost kill my immune system
This is really worrying
thanks very much. can i download and translate in my country?
what is meant by prognosis?
God bless the patient
Is this serious matter to worry??? Can it be cured in single treatment or need long term treatment ???
Thank you so much 💖 !!
This is reoccurring for me, ive had it for 3 years now and i feel so alone.
My sister also has a disorder like that but she feels burning through her skin whenever it appears and it’s been 3 years sometimes it disappears but then appears again , it involved her kidney too she uses steroids for that
I had such a bad case of this at 13, no one knew what it was. My rash was so bad, they treated me for staph infection. I got a kidney disease from this, called it’s iga Nephropathy. It’s horrible
Oh No. How are you doing now? What tests were you doing before you got to the kidney disease? What about symptoms?
I had Hsp and I had kindney surgery and by joints were in so much pain.
Once you're diagnosed with HSP is it for life? As in, is it something that you have and not had even after the symptoms have gone?
if you have check your cholesterol and uric acid
I got this in 2016 when I was 8-9. I was in hospital for months. But since then nothing has happened. I have been like completely healthy and normal.
@@dr.Daniyalmustansar bhai Apka bhi hua tha Kya??? Bhai muje hua hai 2 months Hoagaya lekin abhi tak thik nhi hua steroids bhi chalu hai lekin Koi farak nhi pad rha condition getting worst pls can u help me??
@@Ankit-zt6yk mujhe bhi abhi hua h aap ab kaise Ho plss me kya kru konsi treatment chalu kru mujhe help krna pls
I had it when i 6, i am 29 now.
Didn't have any recurrence of the disease in all these years. But my immune system is weaker as compared to anyone with a similar lifestyle as me. I was on steriods as a part of the medication. Don't remember the names but steriods tend to leave a long lasting effect on your body.
Haven't had any serious health issues.
Im 36 year old male.
I got HSP
NO Renal involvement..
But still the purpuric patches are repeated if i work for several hours.. all started more than 5 weeks now
Thank you very much❤
can i work out if I have this?Also I'm on cortisone
Sadly to say, I would not recommend physical activity. I had a server case of HSP when I was 19.
In my case, it was dangerous to put my legs below my heart. Gravity would bring blood to my legs and cause the lesions to worsen. Physical activity would also raise my heart-rate and pump more blood, causing the disease to spread.
I'd recommend elevating legs above the heart, and try to calm the mind. Stress hurts the body. Wim Hof breathing techniques helped me a lot
if you have check your cholesterol and uric acid
Can someone check my red spots on my ankles? I'm not sure if i have this HSP condition or what. Red spots on my ankle started to grow and spread up to my legs but the growth is slow. But now it started to move again and some spots are getting bigger. Please help.
Buna ! Fetia mea are ,sunt într-o stare grea nu stiu ce sa fac a fost internată,si a recidivat dupa 4 zile de stat acasă cu dureu de cap, dureri de burtă! Ce analize sa fac ! Va rog un sfat sunt fooarte îngrijorată 😔🙏🏻
Hope she is well now?
Why the rash of hsp occur only at lower limb and buttock ? Is there any cause of it....
My daughter is infected with this
Plz tell me what could I do at home
Thank you❤️
How often does it recurrence?
How do I get the book
എനിക്കും ഈ രോഗം വന്നു. തുടക്കം തലവേദ ആയിരുന്നു അതിന് ശേഷം വയറുവേദ വന്നു പിന്നെ കാല് ചൊറിഞ്ഞു തടിച്ചു. ഗ്യാസ്ട്രോളജി , ഡർമിടോളജി, മെഡിസിൻ ഇവിടെ മൂന്ന് ഇടത്തും കാണിച്ചു. ലാസ്റ്റ് ഈ രോഗം ആണെന്ന് സ്ഥിതികരിച്ചു. രണ്ട് ആഴ്ച കഴിഞ്ഞാണ് രോഗം പൂർണമായും മാറിയത്. സ്റ്റിറോയിടിന്റെ ഗുളിക കഴിച്ചതിന് ശേഷം ആണ് ശെരിക്കും മാറി തുടങ്ങിയത്
Ippo എങ്കയുണ്ട് brooo..
@@chrisj8389 ഇപ്പൊ കുഴപ്പം ഇല്ല.
I was diagnosed about a year and a half ago at the age of 40 with hsp. It took what seemed months for the doctors to figure it out and that was through a kidney biopsy. Once diagnosed I was put on cyclophosphomide a type of chemo to stop my immune system but it failed and now I am on prednisone daily along with oxycodone for pain. I am also on 3 different high blood pressure medications and still my BP sits around 160/100. It's not uncommon for my blood pressure to sit around 180/110 consistently. This has been the biggest battle of my life and without my faith in JESUS CHRIST, I honestly can say I would have committed suicide months ago as I suffer from other underlying ailments because of the disease. Death comes for us all but in JESUS their is eternal life and no more suffering. No sickness and no pain. I can't wait
AMEN..keep your Faith Jesus loves you
Ive had this for over a month now and had to be hospitalized due to it spreading to my kidneys and intestines. The symptoms keep coming back and it looks so terrible, I cant wear half the clothes I used to. I wish anyone else dealing with this a quick and safe recovery
How are you now, it went away after 2 months for me, hope you're well
I hope your well i had it when i was 9 and luckily made a full recovery with nothing wrong after it went away
How are you doing now? This is scary
Thanks alot ❤️
Thank you very much!
Glad to help
My younger brother has been suffering from this since 8 years. Kindly tell solution
Hi Teacher your videos are really impressive and knowledgeable,, Would you like to guide me which APP or tools you are using for making videos ,
I used an ipad pro with procreate. I record the screen of the ipad, then use a mac to edit the video with final cut pro. one day I will make a video to explain the process
Zero To Finals Thank you very much, I appreciate your efforts you are doing great job sharing knowledge in a smart way
Great video
I have been diagnosed with HSP about a month and a half ago and I'm afraid of it coming back.. Did any one else's bump / ulcers on their legs start to heal but the red dots come and go from under my belly.. I'm scared to take my medication because I don't know if it will actually help me, its called Doxycycline Hyclate. If anyone can pls help?
I had this when i was 17. It was very painful.
I have hsp 3years continue 2022
Plz suggest treatment for this,
Informative