On April 3, 2004 my 24 year sister lost her battle to this disease. I just saw this video and it brought tears to my eyes because l saw my sister all over again battling for her life. Please never give up. I pray everyday that a cure because available and never has to affect another person and family again. God Bless.

i'm a nursing student learning about this. if you have this, stay strong, i'll help the best i can too

why am i watching this before bed.. now im shitscared, pretty much crying and thinking about getting the courage to end myself... i dont want to lose my hands, and get sicker. of all the things to get...

I have a systemic scleroderma. This video made me so emotional....

I was diagnosed with Progressive Systemic Scleroderma. I had a Stem Cell Transplant that stopped the progression of the disease, 2/22/2011. Dr. Richard K. Burt at Northwestern in Chicago, IL saved my life. He is my Hero. I am now 74 years young now. I have learned to cope with this disease even though it has totally changed my looks and my life. I stay positive and deal with it the best I can.

My best friend passed away yesterday from this. She was diagnosed 1 year ago. There needs to be more awareness about this illness! It is heartbreaking. 😭

im a medical student and i have an exam in a couple of days on internal medicine andseeing people actually suffering like this made me so emotional,, i wish there was a cure

My wife was diagnosed 7 years ago with systemic scleroderma and Raynauds. She has more of the digestive problems. We just recently started seeing a Functional Medicine Doctor. It is doing wonders. Please look into it if you have this disease. A HUGE help is the Reishi Mushroom and the spores of it. Please researsh that and you will see. She was originally on like 7 meds. She is down to only one and is weaning herself off of that. She should be completely off of it a week or two. I have personally done ALOT of research these past 7 years or so and believe me when I tell you that you need to take control of your health and make changes where needed. Don't just rely on your Medical Doctors because they just want to mask and treat the symptoms and not tackle the cause. It is your job to tackle the cause with everything you have. God Speed !

Thanks for your compassion for us who live daily trying to survive with Scleroderma.

I was diagnosed when I was 6. This really needs to be researched

One of my former classmates died of Scleroderma at age 49. I've had Primary Raynaud's since I was a child, and so I can relate to some of the problems Scleroderma patients have to deal with, but it's still hard to imagine the extent of agony they endure.

I was diagnosed with scleroderma (crest) a couple years ago. Eight months ago I became vegan (what I ate) and the skin on my arms is more pliable now. Before I could not pinch any skin, now my skin actually moves.

This is a really good video. Thank you so much for making it. It really helps describe to others what's going on with my body and how friends can help.

You are strong and brave, I just got diagnosed and I watch you, your all such an inspiration.

I relate to all of them. didn't know anything about it until I saw for hope. I came down with it in 1997. I'm not giving up. I try things.

These patients really need encouragement, teaching and continued assessment as they have one difficulty after another

I recently met the love of my life and he was diagnosed 3 years ago.. I love you Darryl. Thank you so much for the video and the information. May God Bless all.

Thank you for making this video. Systemic scleroderma claimed the life of my grandmother and my son was diagnosed with localized scleroderma. It took two years and a biopsy before doctors could figure out what he had. Building awareness is critical!

I was diagnosed with this last year so I am glad that I can send this to people so that they can get a better understanding of what I am going through during this.

Thankyou for this video, I'm a medical student and this illness will stick in my mind now. I hope one day we will find a cure

Wow, I've never heard of this just learning about it through another video. I think this is an instance where stem cell research might help from what I've seen unheard? I hope anybody with this know I'm thinking about them I would be super scared and I can happen at any age it looks like as well. I lost feeling in my hands, you do learn to do things differently. I'll never snivel again when I get frustrated. You all are amazing in this video 😍

My sister Bethany has scleroderma but it was only on the skin .she used to have trouble opening salsa cans doing push ups but though all of it she stayed happy she never complained we kept praying for her and in about three years it started going away I can't even tell she had it. She's the best and I love her and I hate that she had to go though that

There are so many types of scleroderma. I myself have undergone a few surgeries to rectify the physical symptoms with some success. I'm happy that my condition went into remission about 8 years after being diagnosed. I wish the best for anyone currently suffering from this condition!

My niece was just diagnosed with scleroderma (systemic sclerosis). It has already attacked her lungs and heart. She has stage 4 pulmonary hypertension and severe heart failure. She is 37 y/o. Her drs have started her on Treprostinil via IV and she will be on this the rest of her life. I am terrified that her body wont last much longer.

Barry!!!!! I miss you!! And Cowboys!!! God bless you!

I've been diagnosed with this three days before Christmas and thanks so much for sharing because I'm really having mixed feelings, I'm a mother and wife and I'm striving to be with muy family for a long time but it does make you rethink and consider things differently. I'm praying for more funding for further research because after all we're people to and we deserve answers

My sister was just diagnosed and I’m terrified for her. She doesn’t even fully comprehend what she might deal with

Thank you for this video

This video moved me to tears. My best friend suddenly stop talking to me and he dissapear. I just learn he has this disease.

Emotional video. Reminded of my own condition back in 2012. 6years ago, I was diagnosed with Systemic Sclerosis. Keeping up with Homeopathic medicines. Feeling much better.

I'm so glad I found this video. I'm 20 and am starting to have more symptoms.

Thank you for talking about you Chronic Illness

I was diagnosed with this 12/26/2017. It is progressing and this is a difficult disease to deal with as we never know what the changes or challenges will be from day to day. This June I rec'vd the dx of multiple myleoma as well. I have made the choice to not treat it as there is no cure for the SSc. I am making the most of the days in whatever way I can....

My dad died of Scleroderma. I never heard it before until my dad was diagnosed but it was too late 🥲

i really need someone to listen and to care

Thank you for this video Im sure whatever information you didn't share or what you don't know cant be said in a a few minutes or hours. Thank you again. My wife (69) and I will be married 50 yrs in August. Last September she was put on oxygen 24/7 first week then only at night time. She has been on oxygen to this day in April '16. As we understand Scleroderma can cause Pulmonary Fibrosis which now seems to be the worst issue. It seems the Rheumatologist and lung dr. seem to be well diversed but still we search. Thank you again. Ron / Dallas TX

A STEM CELL TRANSPLANT BY DR. BURT AT NORTHWESTERN HOSPITAL IN CHICAGO REALLY HELPED ME!

Hopefully they find a cure soon ! I watched the movie earlier for. Hope. These people that have this go through terrible changes to their whole body. Sending my prayers and praying for all who are afflicted. God bless you all and hope there is a cure soon !

I was just diagnosed before Christmas as having a autoimmune disorder but I’m still working on finding out what ones , my dr thinks I have 1 or 2 different once but in my heart this is what I think I have

I lost my sister after 10 years. She was 42.😢

I was just diagnosed two days ago. This illness has ruined my life, I hope those who were also diagnosed make it through. It’s a horrible illness.

I’m 15 years old and I had this disease from when I was 4 and was firstly treated by guipsone(kortizone) then Cell crept(autoimmune drugs) and methodyxrate(injection) every week. This disease is painful, but thanks god on everything. My uncle also suffered from this but I think it have something to do with genes.

God bless you ❤️🌺❤️🌺

Thanks for posting this video. It explains this disease I am trying to locate recipes for a person who is suffering from scleroderma. I wish there was an online recipe book.

I met Jo Bonner in 2010 (the governor of Alabama) to pass a bill on more research for Scleroderma. I'm not sure exactly what was done, I was so young (10 years old) but I'm now seeing way more about it and it really comforts me to know that I'm not alone, for so many years I battled with myself and this video made me cry so hard but more than anything just happy tears and comfort knowing I'm not alone. I was diagnosed when I was 8-9 but actually had it years before. No doctor knew what it was. Thank Jesus my Scleroderma is arrested therefore hasn't attacked any further. I have it on my whole right ankle, right foot and toes, right leg up to my knee, also on the arch of my left foot and on my big toe, I have a large strip of it vertically on the left side of my stomach and also (TMI) but the left lip of my woman part and inner thigh. It has distorted every part that is is on and everything is significantly smaller and tighter on these certain areas. My main struggle is how my right leg and foot/ankle is now deformed it's embarrassing and it's an emotional journey and it's so hard to explain it when people ask me, they think I was born deformed or my leg is fake for some reason or another. I have learned to cope and accept who I am because I am not my disease. The right people will always look past these things and see you for who you are!

I would recommend that you create a account on Inspire.com and post your questions to others with these conditions. There are so many great people that are happy to help you - and you can likely give some insights of your own as well!

I have Scleroderma for ten yrs, Live day by day make the best u can. Wish I could share something with other Scleroderma patients.

My childhood friend was just diagnosed with Scleroderma last year. 😞

Great advice - then go out and advocate for more research and awareness of the disease so a cause and cure can be found soon!

Hi, my name is Cynthia Burgos and I am diagnoised with Scleroderma since 2009 of August.

I was told last week I had this. It's scary. I'm not sure how long I have had this but I know I'm in pain

This is so Sad. 😪

My sister passed away from it. She pretty much diagnosed it herself. She’s been gone 20 years.

The book by Henry Scammel explaining the use of antibiotics such as Minocycline is worth considering. Best wishes!

did not expect to see jason alexander here

This is one of the WORST diseases I habe ever heard of

My mom was diagnosed with this disease in 2015 and she passed in 2019 due to complications where the scleroderma reached her heart and she suffered from sudden cardiac arrest.

my mother died from this disease in 1983. she was only 41 years old at the time. she suffered for 6 years, and the disease was not well-known, and being from India, was poorly understood. the hardest part to watch was how dehabilitating the disease was in her hands, how she could not even lift her arms to comb her hair at night, or to dress herself, at the end. ultimately severe high blood pressure claimed her life. i can only warn people with any symptom - go to your doctor without hesitation.

I'm going in for checks on this level and that level, eliminating possibilities of a diagnosis visit by visit, and this video right here brought me an odd, 'closure', if you will... P.S. I didn't know the guy from Hells kitchen had scleroderma... I'm a guy that makes jokes in the face of death btw...

I lost my Mother to this disease 13 years ago. My heart goes out to all the people it affects it is a horrible disease. I really do hope more research is done into this disease god bless you all

Go to our website at scleroderma tristate dot org and find our video library under Find Resources. Videos from our educational forums are available to view 24/7. Learn more about this disease - advocate for the passage of the Scleroderma Research and Awareness Act and support research efforts!

My girlfriends son passed away from complications of Scleroderma. It was heartbreaking... such an awful disease and feel for those who have it.

Diagnosed when i wad 14 now 31. I am in pain and can still move my hands etc. My bowels do not move etc and i find it very hard because i look pretty normal on the outside you can see spots. Nobody understands in my family. My boyfriend is a huge one

My neighbor was diagnosed last year with scleroderma. I work as a registered nurse, and just knew her life was no longer going to be the same. Least to say, I was terrified knowing how debilitating this disease is. Fortunately, we have a great support system, and a fantastic rheumatologist whom helped her tremendously. Later we consulted Planet Ayurveda and now she is much better now. Thank you for spreading the awareness and educating the world of this disease.

I have a scleroderma when i was 12yrs old until now, here in the philippines

I don't have this disease. I have a different autoimmune disease,one that is acquired (hiv/aids). I really hope and pray that there will be a pill (just like in my case) to make people live independent and normal lives. Stay strong,I pray that things will get better in time.

I have scleroderma, it's changing my life. So tired of hurting. Some days ok some days hell. Wish there was a clear.

My husband of 30 years has been suffering with something like this since April, his hands are in constant agony, and both are basically claw shape, he can’t open or close either hands, it’s now affecting his foot, he had to quit work because he can’t use his hands for anything, and now that I found this, I’m absolutely terrified. If it is indeed what you are saying, my husband has already said he wants to end his life, he’s never said anything like that in the 30 years we’ve been together, and it’s tearing us both apart, but I need to know how is it diagnosed? He’s already seen three different rheumatologists, and none of them can find the cause of his problems, so I’m going to tell his doctor about this and see what happens, I just pray to God that it’s not, because I myself have been in and out of hospital for the last 30 years because of Crohn’s disease and cancer, and I had to retire and go on permanent disability five years ago because I’m left with only 5% of my bowel after 37 operations, my husband‘s been my rock, now he’s in this same situation as me, I don’t know what they were going to do

My beloved son suffered Systemic Sclroderma

I have scleroderma and I’m 15 now I’ve had this condition since I was 9 years old and since then I’ve been on methatraxite injections every week to help it get better I’m also on steroids to help when you think about it I never knew what it was until I was diagnosed with it but now I’m glad I know much more about it, go subscribe to my KZfaq channel if you want me to explain about my condition and how I cope with it with people at school and just in general ☺️ thank you❤️

My father had Scleroderma for 13 years after which he passed away.

Take a look at mycoplasma. I am researching scleromyxedema which I have and found mycoplasma seems to be involved in both diseases along with other pathogens like shigella which there are 4 kinds. I targeted these and found I was more energetic. Scleromyxedema is similar but more rare than scleraderma Good luck, we suffer similar problems.

Eating vegan helps but I still get some swelling on my fingers. I took a vacation to Florida, it's so hot and humid there, I found my skin was so much more softer and I was very nearly able to close my hands. Right now it's just my fingers that are affected.

Great video! My sister in law was diagnosed with it and her health has gone down the hill very rapidly. She lives in Peru, where there is very little knowledge about this disease. What treatments have helped the people in the video? Would you recommend any doctors that have been particularly effective and helped you carry on a life as normal as possible?

My wife died from this. It totally changed the way that she looked.

My wife got diagnosed yesterday

I’m diagnosed with the scleroderma after I giving birth since 2018 and scleroderma comes up very quickly and also it’s effects to my organs. In 2019 October I’m completely can’t walk n can’t do anything for myself till now. It’s very painful.

I always have to step up to reach items.

Its been 22 yrs now since my mom was diagnosed with scleroderma. Iwanted to give some input into it as I know how it causes.

Diet makes a huge difference

Have known friends who are in remission.

I think I might have this.

My mother died of this disease 6 months ago, it affected her lungs.

My name is She'll Williams and I've had diffuse Scleroderma for 31years!

I don't want to live with it anymore !!!!!!!! My spirit is fractured to the point where I don't know who I am anymore. Is there anyone who can help??

my sister have this

if it's autoimmune, check the gut bacteria...get on immunomodulators/immunosuppresants...xeljanz works on auto-immune disorders..so this along with all autoimmune conditions can be altered/stopped/reversed, IMO. it's like two piles of M&Ms...scleraderma is the black ones, total remission is the white ones...gradually heal your body/mind/essence unit from moving 1 or 2 black ones to the white side every day..and it'll stop the autoimmune response, IMO.

I have this horrible disease along with Lupus and Polymyositis otherwise known as “Mixed Connective Tissue Disease”.

My mom had no symptoms of scleroderma till she fell & died 3 months later. Her tongue harden but her external skin was soft. I have ceiling high ana's with "probability of scleroderma". My fingers curl but more due to pain. So, does it start with a rheumatoid pain & we curl the fingers to avoid pain? My middle finger drops off and I crank it up. I have scleroderma of the bone in the collar bone. If the bones wear away is it because of acid from pop? The build up of calcium in the body is it cause the bones are washing away? Does calcium in itself suffocate the skin of the organs? It is a mystery. I use small cups & try to keep my fingers flat. This part reminds me of polio which has nothing to do with scleroderma but polio shortens the muscles & possibly tendons. Shorter muscles will cause the fingers to fold, rite? Does calcium block the skin from being fed? U R rite...more research is necessary.

localized scleroderma also affect the organs? I have this disease and suffer from inflammation frequently.

My mom never did drink pop...only tea...not even coffee. She died at 78 with scleroderma but had not symptoms of it 3 months before her death. Let's all drink tea. BUT, when I had extreme arthritis pain going off of tea for 2 years elevated the extreme pain wherein I could only place my elbows on an arm & rotated my position continuously. The pause between the rotation helped to ease the pain. I was so sensitive to cold that I slept with an electric blanket & had to rotate my body up to the blanket as I had no heat. I had gone to Japan 1978 working close to a nuclear plant & wonder if this is mimicking scleroderma. My family still does not know that I went to Japan instead of a funeral as a volunteer for less than a week. I have collagen coming out of the pores on my nose. I wish it would all come out as I have developed lumps of it underneath. I believe in Jesus see you in the future. I feel for the kids. What organ produces collagen cause I would like to have part of it taken out.

My goddaughter aged 13 yrs old and she has had scleroderma for a few years now. She is on medication which makes her sick etc. Will it help if she has green smoothies and raw juice? Will it help if she goes vegan? Any information will be gratefully received.

Please!! We need medicines to control or to stop the skin fibrosis, tightening. Please scientists !? Pharmaceuticals help us 🙏🏽👨🏽‍🔬🔬💊 This is one of the most strangest, and cruel of the autoimmune diseases. A disease that turns into mummies. Please give us hope. Help us!! 🙏🏼

MY beautiful sister died from this horrible disease ,she was only 29. When I pass on id like to ask God why? No one should have to live with this awful disease. Makes me angry inside.

My wife got diagnosed with it a month ago....the terrible thing is that she`s been sick for 3 years!! and the doctors have been saying that she has dementia all the time. But all of a sudden they took a bloodtest for "Scleroderma" and yes there it was!!.....So what should we do? ...... Regards from Sweden

i was diagnosed with this deadly disease called scleroderma.it gives me lot of muscle cramps. it slipped out my foot and it also give me a stokes. I need help

hello, this is an informative video on scleroderma. my colluegue was also suffering from this condition. he visited many hospitals but didnt get any relief. then one day he visited planet ayurveda and got sclero care pack. now he is fine and fit. thanks to planet ayurveda

Are there similar documents for people living with Sjogren's? I have Sjogren's, Livedo Reticularis and Raynaud's and I'm seeking for other people who struggle with these conditions in order to exchange experiences and knowledge on possible treatment. Thanks in advance for any responses.

♥♥♥♥

My uncle has it, his doctors tell him to go on diet .. now he's only bones and skin ... 😔