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- เผยแพร่เมื่อ 30 ก.ย. 2024
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Thank you EVERYONE who has shown some love for this video! Here’s an update video on how I’m doing now th-cam.com/video/UC0k4FHOhBY/w-d-xo.html god bless you all 🌹 x
Please give a lists of food you eat everyday please
I went vegan and I’ve had a lot of success and off the meds !!!
I am Lhot from the Phils but lives in South Korea. I'm 33 years old. I was recently diagnosed with Nephrotic Syndrome. Still waiting for the result of my renal biopsy to know the underlying cause of my disease. Thanks for sharing your journey with us! We are indeed not alone in this battle! God bless us more and more! :)
I have the same minimal change nephrotic syndrome I was diagnosed when I was 6 and I’m now 18 it is hard but the way I like to see it is we are strong enough to cope and that’s why we have it. If that makes sense Xx
I have had the same illness ( minimal change disease ) since I was 12 , and I am now 22, the disease is going up and down , frequent relapses ( a time interval of at least 8 months between a relapse and another) , it's not really the disease,it is the medication and side effects, I have been taking prednisone tablets for 10 years,the problem is that I study medicine,a 4th year medical student, and whenever cortisone side effects are present I feel scared , can you contact me please, I am in need to know more about those who share the same problem,how do they cope ?
I can’t believe it’s taken me so long to find your channel! I was diagnosed with MCD four years ago when I was 18. I relate to your story so much - everything from the insane swelling to the cyclosporine. Thanks for sharing your story and making me feel less alone with this disease!
I'm so glad we can be on this journey together!
I was diagnosed with nephrotic syndrome at 3 years old, Barely remember a lot but I do remember being in hospitals for weeks , or months at a time because of my young age.
Recently I am super tired , I don't want to eat
When I do eat it's salty foods which my doctor said Never have a lot of salty foods as a precaution. My symptoms are getting more frequent and 9/10 times me being bed ridden for days or a week-
I'm going to the hospital today to see what's up- wish me luck ✨
Maybe try avoid salty foods as these will make your symptoms worse but I wish you all the best for you appointment 🙏⭐️
i found this vdo now on youtube
actually my 4 year old daughter diagnosed by nephrotic syndrome back in 2019 and doc suggest we need to give her RITUXIMAB injection . did u take this injection and what was the final result
thanks in advance
I’m 13 with nymphrodic syndrome I hate it
Thanks for your story Jasmine , lam 49 and just diagnosed, just trying to get a grip on what’s going on atm ... Good Luck
Mark Davies no worries at all! You’re one of many fighters and believer now! Another video of mine may be if more help to you as it is specifically aimed at newly diagnosed people like yourself :) take care
th-cam.com/video/VtIKw-ekCQE/w-d-xo.html
Thanks a lot! I feel that I am not alone in this journey. Please upload more videos, it would be very nice of you! Take care xx.
❤Hope you are doing well, Thanks for taking time and sharing! I have seen the Rituximab infusion video aswell and i have mine in 2days! 😊
Any 18 + cured the nephrotic syndrome . I am 17 in 1th year college l find out this problem very difficult 😠😠 to cure .please pray toGod . Cured no albumin , suddenly albumin +++
Yes, I am cured. Had it when I was 7, at 8 years old I was cured. I’m 28 years now
I'm 14 yrs old and I've had nephrotic syndrome since 2 and I get admitted to da hospital like 2x a year..my doctor told me to do homeschool juat for 1 year and ima be back to school next year
im 13 and ive had it sense 2 as well
Best of luck with everything!
I was diagnosed at 57 and it came out of nowhere, does not run in my family. Lost 50 pounds of fluid and had to make radical changes to my life style. Support from my wife was monumental as well as a good doctor that listens. Thank you for sharing.
Wanker Buddy yes I personally believe it is a stress related illness that can happen to anybody at any given time! I’m glad that you have a loving wife to support you! Best wishes
If I can ask; I've been on prednisone since early May. Started at 60mg and now am at 25mg. I was lifting weights and running on a regular basis. Did you notice any impact from the medication on your activity or strength levels? I know my weight lifting has been impacted dramatically and I'm back to running up to two miles three to four times per week.
Yes definitely 25mg and above pred very much effected my activity levels, just keep doing what you’re doing to keep up the strength!
I was diagnosed when I was 2. I remember when I had to take the awful liquid steroid but I was eventually cleared. You can get through and I have faith in you!
I got diagnosed with this at 11 and my dad made me realize that he never really fed me much salt in the first place im taking 60mg of pretazone a day at 11 40 mg water pill at 11 and a stomachache pill and on top of that school was hard im still off of school till new year
I would say that the worse part is prednisolone
I thought I was the only one who had to go through all these things for so long😊
What is your work out routine.... I’ve recently been diagnosed..... I’m two weeks in. Your video has gave me a lot of knowledge thank u
GABY Tejeda hey! I currently don’t have a standard work out routine as I am a professionally training dancer so dance a lot! I will hopefully be able to do film an easy at home one at Xmas time!
Can I eat non veg in this disease
I was diagnosed when I was like 7, it's cool to hear from someone the same age as me who has the same thing ☺️
I thought I was alone
ASHLEY CUNNINGHAM you’re never alone!
I am minimal change also. Been for 31 yrs. If you need any tips just let me know
Can I eat non veg and how much water can I drink ? And how to remove excess fluid from my stomach
Could you share your email address ? I would like to ask few questions
Hi Jasmine,
Thanks for these videos. I'm inspired by your uploads and really grateful.
I was diagnosed iga nephropathy 2 years ago and have recently gone downhill a bit, meaning I've been put on 60mg a day of prednisolone, to add to my current candesartan of 8mg per day.
It's pretty crazy having kidney disease and it could totally get you down.....but you're a great inspiration in your positivity.
I'm hoping to stabilise asap and also live a very active lifestyle as a head gardener of a large estate, and mega keen mountain biker.
Ps......I was just like you past and present with my diet! Made a mistake of eating 2 whole garlic cloves in quick succession to help my blood pressure tonight....literally thought it was causing me a heart attack, so won't do that again!
Thanks again, Bob.
Thank you for your comment I really do appreciate it! your kind words have made me smile!
Enjoy watching you dear. My son has NSMCD. I would love for him to watch your video, somehow he will skip through the menstrual cycle part! :D haha enjoyed you! God bless!
I was diagnosed at the age of 2. And my friend just sent me a link to your channel because at the moment I’m going through all the symptoms all over again ( I had a relapse). I feel like crap. My legs stomach and feet is swollen just how you explained in the video. My face finally went down. I been HUGE since a week before Thanksgiving. And I’m just waiting for the water pills to kick in to help with the swelling.
I know this is a late comment on this video but I have fsgs, a type of nephrotic syndrome. I have had it for 2 years and I am looking for a living donor because all of the medications didn’t work, even chemo. So I hope you are doing well. I hope you don’t get as far as I am right now and go into remission. Love ya
I have the same problem just like you:) now I’m 10, I diagnoses this since I was 2 and have so many medication to drink.
Hi I have been having this for 5 years my doctor said it’s now much better is there any cure for this
Is there a particular diet your on?
Apart from salt, what else do I need to avoid in my child’s diet?
Subtitulos al Español por favor.
Me agrada que hayas compartido tu historia con el Síndrome nefrotico, muchos callan por temor a que los demás nós vean con lastima, pero no es así, nós hace más fuerte :D
PD: También tengo Síndrome Nefrotico
I hate it i have it since i was three and i get fat lose wait i hate the meds they drive me nuts but i can do what i like in sense of life but when i relapes i chill and don't do nothing
I think i will have a second relapse since my body is swollen again i mean not my entire body but my feet is swollen again
I’m a medical student and your story benefits me , thanks and good luck
Great video Jasmine. I am a greek RN and I happened on your video. You gave me the opportunity to understand the illness rather than the disease process that I know, cannot even begin to explain how valuable that is for a nurse. You are really mature for making this video and structuring it the way you did.
Matthaios Kolomvrezos I completely understand what you’re saying! I think it’s so important to emotionally get to grips with what is going on wi5 all illnesses especially the ‘hidden’ ones. I felt this video NEEDED to be made as everything I’d researched before was all the medical side and no one telling me how they felt/coped etc! I’m now writing my dissertation about this within the performing arts world as it’s not widely spoken about so I hope that will also spread more awareness. Thank you for your comment! If you ever need anymore information or have any questions then my Instagram is _jasmine_shen_ 😊
I was diagnosed last year, and it has been hard to find any resources to relate to. Thank you so much!! Appreciate the video
Aleia Arcibal thank you so much that means a lot to me! I never thought this video would be this much use to so many people! Best of luck with your blog! X
I actually have Nephrotic syndrome to so it’s good to hear that someone has got Diagnosed with it and to hear that
you gone Through what I’ve been in
we have the same case, and I still have nephrotic syndrome now. I really cant control myself from eating food with high sodium such as chips. I really want to stop eating but i cant control my self. How can i control my self from not eating foods woth higj sodium? please help me.
shieramay hi there! It’s all about breaking the habit a little hit at a time, think of it more of a lifestyle rather than a ‘diet’ or ‘restriction’ just one thing at a time and just replace them with something else you enjoy eating or find other ways to flavour your food- I tend to use a lot of pepper, I don’t put salt in anything!
We have the same thing and we both have the same system
I diagnosed when I was 16 it’s been 3 years now. It’s frustrating but oh well life moves on. Nice to see I’m. Not alone
Fernando Rivera you’re definitely not alone! Stay strong!
I have nephrotic sydrome
I have The same thing going on right now currently in and out of hospitals I’m super scared 😟
how r u now?
I was diagnosed 1 year ago I. May
Hi jasmine
I just diagnosed with MCD 2 weeks ago
Feeling so hopeless
Hi there!
Don’t worry I know how you feel! It’s only been two weeks and I can assure you it’ll get better in time! These things don’t go away over night but will a positive mind and taking action one thing at a time you can defeat this disease like the rest of us :)
Thank you for your story. My son was diagnosed at 5 years old and he’s now 13. May I make a suggestion regarding calcium? With calcium you should take a Vit D3 supplement. The body won’t absorb calcium without Vit D and prednisone sucks Vit D out of your body. His nephrologist wrote a prescription for 50,000 IU Vit D3 capsule which he takes 1x a week. When he gets blood work done she also includes in the order to check Vit D levels. They have been in a good range. He recently had his first bone scan and everything is normal. Hope this helps you.
Also fish oils have been a part of his supplements from the beginning. 2000mg a day.
JR Mc My daughter has nephrotic syndrome at 4yrs now she relapsed at 6, how is your son? Did he relapse? How many times did he relapse? Please let me know if any diet should be followed .
My son has this too...prayers for us both..I'm really going to work on changing his diet
Im 9 and i have had it since i was 4 but i haven't relapsed in close to 2 years in may 2 years but yeah
And when im puffy and filled with water i take prednisone and water pills that's it but i never touch anything over 100 sodium inless it's a cheat day and i had a happy meal this cheat day and my Mom says only 500 sodium a day so i love brockly carrots patatos and low sodium chips and i love that thats a thing and yeah i should say it in a yt vid but im ok with nephrotic syndrome now and im happy i Make sure my food is low of sodium wont touch the stuff if it says 120 sodium for 51 i wont touch one the only time i do is when my Mom says its ok so yeah sorry for this all but yeah
mimi talks we have the same case, and I still have nephrotic syndrome now. I really cant control myself from eating food with high sodium such as chips. I really want to stop eating but i cant control my self. How can i control my self from not eating foods woth higj sodium? please help me.
I dont know how to help I just learned not to eat stuff in high sodium
I really do admire all the hard work you’ve put in to help your situation out! Massive well done and keep going! God bless you!
I was diagnosed when I was 7
What did you use to stop your feet from swelling please 😢
Elevate your feet daily and reduce fluid intake
My 1 year and 7 months old daughter was diagnose with Nephrotic Syndrome just today, they are doing series of test now. It pains me to see her swelling like that. I hope she gets better soon.
Sending
my prayers 🙏
@@JasminesJourney Thank you so much. She's just got discharged from the hospital today as she responded quickly from the Prednisolone. She has follow-up checkup this coming Saturday.
That’s amazing news! Still sending prayers and wishing you and your daughter great health ❤️
@@JasminesJourney Thank you so much! 🙏🥰
Hi im jistone ongayo from phillioines. I hve diagnose when i was 3yrs old and now im 30 im still suffering this kind of deseseas
aymen214 sultan god bless you! You’re strong!
@@JasminesJourney can you give me an idea or a tips bout life styl for me so that i can apply it on me.
aymen214 sultan my main advice would be less gluten and salt diet, stay positive and don’t take anything for granted :) live your best life!
@@JasminesJourney sorry , but what do you mean by gluten , do you mean the whole protein types ? or that type which is present on wheat ??
thanks for sharing
Khatung Jamatia glad to have helped!
anyone cureable from nephartic syndrome?
Raja Aqeel I‘m in remission since 2012 :) don’t even have to take medications anymore
Jennifer Tzaawa-Krenzler great. It gives us all hope. Stay blessed :)
@@MrJenna07 how did you cure it 🥺
@@princess1093 I had treatment in the hospital for 2 weeks and after that medication for 4 years. I was on Cyclosporine, Ramipril and cortisone. I got checked in the hospital every week during that time, the medication started to work and my blood values got better slowly until one day I was at negative and since then I've been in remission for 10 years :) what about you? are you okay?
@@MrJenna07 my brother has it and we are all panicking 😩 hopefully he’ll get well. Thank you so much , this is really encouraging