Could this be a step on the road for a cure for scleroderma?

Study Reveals New Genetic Link To Scleroderma.

Spændende interview med skuespillerinden Regina Hall fra bl.a. Scary Movie. Hendes mor har sklerodermi.

Please read this wonderful interview with Regina Hall, known from the movies Scary Movie and the tv-serie Ally McBeal. Her mother is diagnosed with scleroderma and she works hard to spread awareness of this rare disease. Thank you, Regina!

Picture from http://blog.abilitymagazine.com

Regina Hall – Interview | ABILITY Magazine.

This is a videoclip from the first systemic sclerosis world congress.

It is my dear friend, Beata, from Hungary – a very warm and passionate young woman who is giving a speech about the topic “Living with scleroderma”. It is a bit similar with the speech I gave at the opening ceremony – thus this is a bit more in details.

Please go to the Fesca website to find other lectures from doctors given to patients. Note that the lectures are in details and they can be a bit scary for some. On the website you can also find other materials from the world congress – pictures, patient handouts, and so on.

Beata Garay-Toth – Living with Scleroderm
Uploaded by antalcs. – Discover more science and tech videos.

To be a scleroderma patient sometimes means pain, and for many even chronic pain – especially if your scleroderma is in an active fase. Mine is quite active at the moment (with joint pains all over) and the pain drains you for the energy that you didn’t have to begin with.

I just stumpled over this article with a few tips on how to manage chronic pain.

Managing Chronic Pain: 11 Coping Tips.

Dansk: At have sklerodermi kan nogle gange betyde at din krop smerter til trods for at den nærmest pumpes med smertestillende. Det er især når sklerodermien er aktiv. Min sklerodermi er i sin aktive fase lige nu, og det er især mine led der ikke er samarbejdsvillige. Smerterne dræner én for den energi man ikke har i forvejen.

Jeg faldt just over denne engelske artikel, som giver et par tips til hvordan man kan håndtere sine kroniske smerter. Vist noget jeg skal studere lidt nærmere.

Managing Chronic Pain: 11 Coping Tips.