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Living with Systemic Sclerosis (SSc)
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- čas přidán 3. 05. 2018
- Hear from Janice, Sheila, Gerald, and Jeniffer- four people living with systemic sclerosis (SSc), a debilitating rare autoimmune disease that causes an overproduction of collagen, resulting in thickening of the skin as well as damage to vital organs such as the lungs. SSc can be difficult to diagnose, resulting in delayed or incorrect diagnosis. Dr. Dinesh Khanna, Director of the University of Michigan Scleroderma Program, explains the clinical presentation of SSc and shares his expertise on managing the disease.
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I was diagnosed with ssc at the age of 13yrs and I'm now 31yrs.....18yrs...it has not been easy. But I have a very strong support system at home. I was able to go through school with this sickness and will have my PhD next year. With God on our side we can make it.
So happy to hear that ❤ wishing you the best
@@biancaalexandratoma702 Thank you 🙏❤️
❤
So happy for you , were your lungs also affected when you were 13
Thank you ! What medical concentration
I was diagnosed with SSc when I was 5 years old. I'm now 52 years old. I developed skin lesions at 5 and have lived with scars all my life. I didn't have many issues with SSc when I was a child or teenager. I started having lung issues in my twenties and within that last 10 years my SSc has gotten progressively worse. I have Reynaud's, asthma, difficulty swallowing food, heartburn, joint stiffness, thick tight skin and my hair is thinning. Yes, I'm seeing a doctor. I just wanted to let people know that this disease is not a death sentence. To me this is just part of who I am. God bless you all.
Hey ..I'm from india.. Good to know that u have made it so far.. I got diagnosed at 20 now i am 27 ..I have lung involvement... Interstitial lung disease... I'm not able to study
...I'm on cell cept and depin retard.. After cell cept I m having so many issues.. I have nausea... N i think it's affecting my brain too.. My heart feels tremors.. Though my skin binding have improved.. I was one healthy girl with fair colour.. But suddenly my colour became very dark.. My trunk area has become dark.. Can u plz suggest me how can i manage this disease better...?? I feel depressed.. All my friends left ME... No body understood my condition.. I saw them distancing themselves from me.. I faced alot of trouble.. Ppl made fun of me saying ur skin has become dirty.. Ol this is because of your past karma.. I tell you till now i have not hurt anybody.. But now ppl see me very badly.. How to manage my lung disease better?? What is this stem cell treatment.. Can i opt fr that?? W8 no for your reply.. I'll be glad
How did you manage with white spots on the face
Thanks for this encouraging message, my mum is just diagnosed with it, heartbreaking news.
Can you contact me please? My. Sister has the disease back I china. My name is amy. You can add me on whatsup. my phone is 6478913346.
@@apnakhanarozana0188 l
So glad someone is focusing on this debilitating disease.
Elite Clinical Research .forever ýours
I know what you mean. I was diagnosed with Progressive Systemic Scleroderma 2010. A Stem Cell Transplant Feb. 22, 2011 stopped the progression of the disease. Dr. Richard K. Burt at Northwestern at Chicago saved my life. I still have Systemic Scleroderma but I try to stay positive and never give up. I am soon to be 76 years old. Feb. 22, 2024 will be 13 years after my Transplant. I am a Systemic Scleroderma Warrior.
Thank you for sharing your story with us! It is really inspiring.
I'm going to see a Rheumatologist from Northwestern in June to finalize my diagnosis and hopefully get help. I was happy to see Northwestern had a team dedicated to this disease.
How much cost of stem cell therapy?
I pray for a cure or better treatments that go directly to the roots of this disease. There's still any medication to control the collagen over production. 😢 I hope we can have a medication to control it, please. 🙏🏼
I was a musician in 2013 I had a heart attack the cardiologist suspected I had it sent me to ISU hospital and done a muscle biopsy and found and had scleroderma and overlapping inclusive body myiositis I have no support from my family or my daughter they've basically left me for Dead lost my wife to cancer in 95 to be glad when I can see my wife again I hate this world.
Chuck Stone I wish you the best🙏 there is a heaven my friend
I don’t know you, but I am always here for you
Keep your head up buddy. Prayers to you.
Sending positive energy to you.
Be strong
This video made me beging more concient about the knowledge of all the many diferent diseases, I'm so impacted to know all the process that the people have to pass as a patitent to get a certain diagnosis. I think that now and in the future, the diagnoses are going to be more efficient than now, and it's so pleasure to see hay many others specialities are working together to get a better lifestyle to the patients with this disease
God bless everyone on this journey ❤
My aunt passed aways few days ago because of that disease. I wish god grant me one wish, and that is to erase that disease so everyone can live happily and worry free. Im at her side till her last breath and it is traumatic to me. I still have hard time sleeping.
🙏🙏🙏
Thnk you for sharing I have systemic lupus erythromytosis, pulmonary arterial hypertension, pulmonary embolism, I've have an attack , and I have systemic scleroderma. It's not easy cuz I suffer from one or the other on a daily basis, i use oxygen as well . I have to try to strong and not overexert yourself trying complete a some what Normal life .:)
I have systemic scleroderma as well, and it has ruined my life. It is a breath of fresh air to see that we’re not alone ❤️
Hi, I hv the same thing we in it together sending u lots of Love❤
i am also having systemic sclerosis.suffering a lot.not able to do day today activites...
@@biasedjedi4353hello how are you now, I'm from India
I was diagnosed with this kind of deaseas and it makes me feel bad about what is happening of my skin it turns dark brown and become white itchy skin too
And I can't tolerate cold
I have bone ache ,skin tightening,hands and finger become flappy I really felt so bad
Thank you for this. Too many of us. 😏
Systemic Sclerosis ILD/Pulmonary Fibrosis ; PAH
I am also ssc patients
May Father had an aggressive form of Scleroderma and passed away from the disease at 62 - that was back in 1998. I wonder what outcomes would have been like today for him.
Probably not much better. They still can't do that much for severe forms of it. Still a death sentence if it's affecting your heart & lungs sadly. Gadolinium based contrast for MRI scans can trigger this disease regardless of how good your kidney function is, I found that out the hard way after being in great health before the needless screening scan triggered immediate health changes, followed by my blood work flipping from normal to abnormal rapidly post scan.
@@BrianMillsSkills Wow, that's so sad to hear. I had an MRI 2 years ago, no contrast, because they thought I might have MS. No lesions, so no MS. Symptoms were attributed to a disc issue in my neck. Now there are more symptoms and tests are being run. This is one of the possible outcomes, but we don't know yet.
Can systemic sclerosis patient take HemoHim supplement(korean product)?
Please!! We need medicines to control or to stop the skin fibrosis, tightening, something that really stop 🫷🏽 the collagen over production. 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 mom is diagnosed with this in 2008 and now she is on oxygen
Same here. My mom just got her oxygen tank a few months back. I'm praying for you! I know the worry and feeling. My mom has been diagnosed for a few years now. It is an aggressive disease and I'm praying for a cure.
I'm sorry to hear that. The treatments still are not as good as they should be.
I'm sure there is variability among patients, but can anyone tell me if there is a general number of years of life expectancy for systemic sclerosis?
ranges- some can go to 30+ years and some can be less. its all about treatment and getting the right doctor!
Can you help me, my friend is suffering many problems, because of this disease
Hello saily.... This is not a good problem.... What problems does she face
Come to Vellore CMC
Do they have good treatment?
I had it too
Syaza Ainaa had ?
@@mannyhernandez6828 probably means has....