After 10 years with systemic sclerosis, what can I expect?

Patient congress at 4th Systemic Sclerosis World Congress, Lisbon 2016, February 20th - 1130-1200
Dr. J. Lee (CAN): Predicting the future with systemic sclerosis
K. Fligelstone (UK): A long life with systemic sclerosis

[@AmyEBee-vd6vy]

I do believe there is a link between dementia and scleroderma. I am 40, have been thru renal crisis, I have scarring of the lungs, pulmonary hypertension, the list goes on. I saw a nuerologist, and was also diagnosed with early onset dementia. I have phases where it gets better, and it also gets alot worse. I also have depression. However, the spells that led me to the neurologist are periods of time where I become very confused. I cant find words. Anything having to do with numbers I forget. I've loved math, I've played with numbers I see from adresses to signs or labels with numbers. My entire life I've done this. I am unable to do this most times now. With the dementia, I not only lose track midsentence, but I also have been speaking and stopped midstory without even realizing it, not finishing and being completely unaware. With the depression, I've gone thru confusion, but it is very different. I also can no longer comprehend directions given past the first 2 steps. I can go on and on about this. Ive battled depression my entire life, and can see how they can be mistaken for eachother, but living thru both feel very different. Describing it may sound the same, but the confusion (etc.) is very different. I appreciate this video very much, it gives me some hope. When it comes to loss of soft tissue, this is quite the battle also. I had very much padding in the buttox region, and it was as if it dissapeared overnight. I am sitting on bones now, which is extremely painful. My G.I. tract is horrid as well. I have scarring thru out, and had one colonoscopy and am not able to have anymore. The gastro could hardly manuever the scope. They have to use a different method to check me. I also have gerd, and a hiatal hernia. The sjogrens caused my teeth to go bad, I had them extracted and had a few surgeries in shaving excess bone along with bone spurs that decided to grow after my extractions. Its been a long road, but I'm here still fighting, living for my children. Everyday is painful but each day is a blessing. Thanks for the hope!!!

[@jamiestieve6128]

We share lots of symptoms. I was just diagnosed but so many issues most of my life were dismissed until about 2 months ago.

[@tomisastarr4183]

What caused the intermittent “Loss of Video”? It is distracting, in what is such an important and informative video. I think I’ll check for a transcript. I am happy that such a video exists and I am glad to see it. It is very much needed! Thank you!

[@galeriadesol948]

Check the video "Angela is Saying Goodbye Sjogren's & Scleroderma!"

[@galeriadesol948]

Please check "Angela is Saying Goodbye Sjogren's & Scleroderma!" and "Are Autoimmune Diseases Reversible?" on KZbin and the work of Dr. Brooke Goldner 🙏🙏

[@dvasquez70]

The second half of the video had a woman speaking... She improved but what helped her? Just time?