What Should I Expect with My Scleroderma?- The "15%" Rule- Janet Pope, MD, MPH- 2017
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- เผยแพร่เมื่อ 29 ก.ย. 2024
- Other than Raynaud’s, gut involvement and digital ulcers, many scleroderma features occur in 15% of patients. The 15% rule helps your health care providers know how often features such as complications from ulcers, interstitial lung disease, pulmonary hypertension, arthritis, Sjogren’s, muscle involvement and heart involvement occur. This is a practical way to understand what is happening in scleroderma organs.
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I thank you for this introduction to Scleroderma. I have it since the year 2018. Started out with significant pain in my right heel into my ankle. I have been tested for Scleroderma about three times the whole Rheumatology Panel and SCL-70 but it comes up negative every time. I have been to all sorts of doctors and they tell me I don't have it.
It is visible on the palms of my hands I have straight lines that run though my fingers into the palms of my hands but the medical staff that I have seen though 2018 (When I started having symptoms of Scleroderma till the present year 2022. I also am a Leukemia Patent ( I am in remission from 2015 to 2022.) But now I feel it's affecting my Hemoglobin which it not good it could make myself relapse back into having Leukemia. I think Scleroderma is in the back of my head that's where it started in 2018 I started out having tightness in the back of my head at the optic nerve site. I am going to be meeting my new Cancer Oncologist in a couple of days a head. I hope he believes myself because if he don't I don't know what I am going to do. To anyone that reads this, if you suspect that you have Scleroderma get checked because after time it will build up in the body like I believe it did to me. Like I said before my tests for Scleroderma have come back negative but the tests for Scleroderma can be negative and a person could still have symptoms. In my opinion for my self it could have been prevented years ago, and now I am at the point that it made myself have a relapse of Leukemia. I am hoping for the best for myself someone has to believe me.
Amanda I pray you get the help you need for What you believe is SSc. I too can relate to your struggle of getting the doctors to take the very evident symptoms of SSc seriously. I had to fight for my bloods to be checked for antibodies for autoimmune and the haematologists went further to state I had strong markers for SSc Crest syndrome. I’ve been referred to Rheumatology in March 2024. Since I alerted my doctor of my drastic skin changes initially in feet and hands in early 2022 it’s been a long wait to get to Rheumatology. I have not been able to work which has affected health overall. Im wondering if there is a link with Leukaemia and SSc (I don’t know) but it’s odd that my dad and his sister both had Leukaemia and my mothers side of family have history of Leukaemia. I’m sorry you are going through a hard time with the medics and pray you get heard x
Hi I think I have linear morphea, I have it on my forehead I'm very scared right now. Please help me and tell me what should I do
Hi Ryan, it's natural to be scared but you can calm your fears by learning about the disease. Visit www.scleroderma.org. The National Scleroderma Foundation is not a healthcare provider and cannot give medical advice. The best thing to do is to learn about the disease and visit a rheumatologist for diagnosis.
I have problem from 2 years I want your help now my finger have wound I am under treatment but I want to do something els for my self
Please call our HOPE line, 800-722-4673
Can someone please answer: is there any evidence whatsoever that Scleroderma can cause a painful sun allergy/photosensitivity? I have a positive ANA speckled pattern with extreme photosensitivity that doesn’t match Lupus at all but does look like the hyper/hypopigmentation patches caused by Scleroderma, except that I experience extreme pain upon exposure to UV light. Within seconds. I’ve been confined to my bedroom 8-9 months out of the year, 10 hours per day for the last 2 years because it’s gotten so severe. I’m just desperate for answers. I also have Reynauds
I wish we could have more doctors that really know about this disease even rheumatologist fail to diagnose correctly.
I can't believe there's no better more advanced treatments for this disease.
Each time more ppl have autoinmune diseases. Please find the cause. 🙏 And I hope someday a cure.
There Is a cure for all inflammation related diseases - quit booze, quit sugar, quit carbs and exercise every day
The cause of all diseases is diet. Strict carnivore diet and water only, for life will cure everything
Please find the right medications to stop this disease! ! 🙏
It appears most RA Drs are afraid to touch you once you get it and some experts are looped in protocol instead of individual care. Glad to know I am not alone BUT each day is hard. This is informative, but the time scale & deterioration is a hard visual. There has to be a cure. We deserve a cure & free treatment. God Bless us all. Keep the Faith. Fight the good fight.
My husband kept telling doctor's here he had it. The doctor wasn't going test him. Told him if he had scleroderma he was a monkey's uncle. Came back positive . Only took a one and a half year later to test him . We need you here In Tennessee
I've been trying for 3 years to get a doctor to say yes, he has positive ssa/ssb primary sjorgens and scleroderma. Shiney red skin I can barely move. They rheumatologist doesn't believe in sero neg or ana neg auto immune.
Just stay on them and dont give up. I totally understand the frustration Dermatologist is who tested my husband. He has red like circles on his skin too. As long as he sits still he can manage pain. As far as blood test they say he has no issues. So maybe there is another test they can do ? I pray you find some answers and get the proper treatment you need.
@@englishmastiff80try looking for capillaries at nail beds. Need a good magnifying glass or microscope. It's a good diagnostic with other symptoms
@@teejay8325find a Rheumatologist department that researches in many rare autoimmune diseases as I had to come away from my local rheumatologist as they didn’t have the experience of SSc I found a hospital where they have a multi disciplinary team within Rheumatology where research is continuous. I pray when I see them in March 2024 I will be seen with knowledge of the condition.
I got scleroderma right after I had Covid. I did not take the jab
This video has helped me understand what I'm going thru..It's scary for me at the moment..I got diagnosed 2 weeks ago..
Melanie Hemphill My mom has it
Stay strong dear
I got diagnosed last Monday, I was diagnosed nearly three years ago but then they undiagnosed me. So I'm quite far on with my disease I was at the point collapse and I've had all the symptoms this lady doctor has talked about. So now I have to go on steroids and some other tablets l can't remember what the others were called a long name that begins with M, lol. These medicines should help to actually slow this disease down I've got the heart problems kidney problems and definitely my breathing. I'm having a Ct scan on Thursday of next week thank God I'm in the UK.
I m still fighting this sclerdorma last 14 years
Hi I'm from Philippines, Do you have your Foundation here or can you suggest me the best place to go? Please recommend the name of Doctors and Hospitals. Thank you!
Hi Ryan, the National Scleroderma Foundation operates within the USA only. Unfortunately, we have no knowledge of rheumatologists in other countries. A rheumatologist is the specialty you want to see. For general information about the disease, please visit our website, www.scleroderma.org.
Calcinosis - is also known as calcinosis cutis. It is a dystrophic calcification of subcutaneous tissue under the stroma. Basically these are unslightly calcified deposits just a bit under the dermis.
Do you know if Plaquenil works for this disease? Thank you.
Hello LillyRocks, Plaquenil is one of many medications that can be used to treat scleroderma symptoms. I would suggest asking your rheumatologist what medications are best for your specific symptoms because scleroderma can manifest very differently from person to person. also take a look at this video for more information on medication currently used for scleroderma:th-cam.com/video/UFfcFvmBqEo/w-d-xo.html
Is this still current information? Thank you for it!
What's the life span for someone who has had systemic sclerosis with interstitial lung disease for 29 years?
My mother is suffering with sceleroderma and she is facing many health problems we are from india is there any possible that you can help me
Contact Scleroderma India on Facebook
Thank you for your assistance. I have Systemic scleroderma and polymyositis. Its a disabling illness both
If you have ana anti centromere positive 1:640 does that mean you hace CREST syndrome the limited form even if you feel you dont have the symptoms?
From Janet Pope, MD, MPH, "The antibody test (anticentromere) occurs in approximately half the patients with the limited subset of scleroderma and is rare in diffuse scleroderma subset. However, some people without any disease rarely have anticentromere antibody positive. The antibody test doesn't make a diagnosis, it is a series of features on the history and physical exam and other tests such as positive antibodies."
I have a lot of the symptoms but nothing comes up on my bloods I do have a rare blood group which contains no antibodies would that interfere with blood results because I always come back negative in everything yet I’m getting worse , please can you help because my doctors have told me to go away and learn to live with all my symptoms without any medication
My mom sister and 2 brothers passed from this and also my grandson has it now
I have red white and blue hands all of the time. I have the ulcers, too
Please share whats new and what md is more good for this demmn disses iam dying .tanx
visit our website to find a scleroderma treatment center near you. www.scleroderma.org/site/PageServer?pagename=patient_centers_list#.WqZ37mrwbmE
Scleroderma Foundation i siad need new info about it not hospital. Ilive in Afghanistan how can i go states to see docs
This video reflects current information. It was recorded in July of 2017. There is other information on our website, www.scleroderma.org/site/PageServer?pagename=patients_home#.WqZ-ImrwbmE
This website offers information about scleroderma in different countries. Unfortunately, we have no additional information about what is available in Afghanistan. www.sclero.org/lang/a-to-z.html#countries
Stem cell transplant
Which is the best place for treatment in India? Please suggest names of doctors and the latest therapy and medicine.
Thank you for your message. The Scleroderma Foundation only operates within the United States. Unfortunately, we do not have information about treatment centers in other countries. However, if you follow this link, you might find useful information. www.sclero.org/lang/a-to-z.html#countries
Hi, my mother is also suffering, she is getting treated by Dr Ashok Kumar, Fortis hospital, Delhi. He is rheumatologist
@ kanchita Dutta
See a Rheumatologist along with medication go for whole plant based diet or millets, little brown rice veggies, fruits coconut nuts and seeds it’s helping me. It is very important to avoid gluten, milk and all meats. My skin thickening is completely cured and I am not taking Prednisone now. Taking oil bath weekly twice. Oil pulling, exposure to sun and making sure all your vitamin levels are good. Doing regular exercise and breathing exercise is very important. Sleeping 8 hours everyday and avoiding stress is very important
supper
Does scleroderma cause significant weight loss?
Do you feel one needs to potentially look at gut health and possibly parasites 🦠