Scleroderma

I wanted to try and make a more informative version of the original.

Other patients of Scleroderma are always welcome to contact me.

Category:

Nonprofits & Activism

Tags:

• scleroderma

[PedroBatistela]

Scleroderma has a cure...and its called autohemotherapy

[FlickeringHalo]

@PedroBatistela No, it does not. It can be treated but different treatments work differently for everyone. And remission is not cured. Even if this therapy did put you into remission I rather other patients not get false hope.

[joanmurgita66]

my daughters left leg is smaller. what drugs do u take if you don't mind me asking and do they help?

[FlickeringHalo]

@joanmurgita66 Currently nothing. For 13 years I used Methotrexate. It did stop the progression and softened my skin but the nausea was horrible so I'm experimenting with other treatments.

[joanmurgita66]

doesn't look like your body has the "areas" what kind do you have? my daughter has big areas that are hard one leg almost coverd

[FlickeringHalo]

@joanmurgita66 Because only my right leg and and a small area on my back are easy to see, I usually cover them. At 0:29, you can see that my right leg is smaller, especially around my ankle.

[soilofk]

I had scleroderma since I was 21, now I am 38! I went to all the horrible things people with scleroderma goes through: medicines, pain, denial, anger, sadness, the WHY? question etc....I learned how to manage it on my own and without any meds, infact the meds were making me more sick than the scleroderma. I practiced meditation, yoya I eat healthy and exercise. NEVER GIVE UP!!!!

[kacklebird2]

Loved your video! Keep us updated on how you're doing. I feel bad for you being so young and have to deal with some crap like Scleroderma. HUGS

[MasterEmeraldPhoenix]

i have it and i am being tested for what works and i am young i am a teen and not even an adult

[XandraDekker]

@FlickeringHalo

You have a beautiful film made with wonderful text . My name is Xandra Dekker and I'm also Scleroderma patient. In the Netherlands is little information to find about Scleroderma. That's why I started a blog. Here I have put a lot of information about Scleroderma and your videos posted there. gelukkige-vlinder.50plu­sser.n­l to find out all about Scleroderma on my weblog and everything I enjoy.

Strength and greetings from Xandra

[michk33]

Your video is so moving. Thank you for sharing. I have UCTD, so I understand what you are going through. Keep fighting!