Scleroderma greetings! My name is Amanda, I am thirty-nine years old and was diagnosed with diffuse scleroderma systemic sclerosis in August 2007, on the day of my tenth wedding anniversary in fact. I live in England although as you can see I visit Scleroderma web sites all over as I am fascinated to see how others are doing.

Although I have no internal organ involvement I can no longer work due to poor mobility, chronic pain, fatigue and itching. If I am going out I have to be accompanied by someone to push the wheelchair. My husband does a lot to care for me as I can't do basic things like get in/out of the bath myself anymore. He is simply incredible.

I have secondary illnesses such as Raynaud's phenomenon, erythromelalgia and interstitial cystitis (IC). I have since found out that IC is also an autoimmune disease and I was diagnosed with that three years prior to scleroderma. The erythromelalgia makes me a "hottie" as it causes blood vessels to over dilate making me the only scleroderma sufferer I know who dreads the warm and seeks the cold.

By the time I was diagnosed with scleroderma I could hardly walk having had rapidly progressing symptoms for seven months. I realize now that it began as morphea back in 2003 with a waxy patch of skin on my shin that sat there for three years then suddenly grew and appeared on the other shin hence the search for a diagnosis from November 2006 to August 2007.

During that time symptoms would appear and worsen quickly, one week my wrists ached and the next they no longer moved. It was as if overnight my hands had been fused to my forearm and the same thing happened to my ankles. Meanwhile I literally dragged myself into work spending time each day in the ladies toilet crying because of the pain, diminishing mobility and trying to pull myself together. All the time I never actually believed that there was in fact something terribly wrong with me.

I can't remember what it is like not to be in pain/itch/be exhausted all of the time as this has now become what's normal. I have tight constricted skin most everywhere.

This has been and still is some journey that my husband and I are taking but we both firmly believe that God has allowed it so there must be a purpose in it. I admit to having no idea yet as to what that purpose is but trust that God will show me and work it out for my benefit.

Finally I would encourage you to be involved with other sufferers as we are unique and everyday is an achievement for us. From your difficult experience someone else can reap a blessing.

Update: 09-06-08

...it’s my disease and I’ll cry if I want to cry if I want to! ...you would cry to if it retired you!

It’s been just over a year since I took home the diagnosis of scleroderma, and I may as well have taken home a dozen chimps—they would have been less disruptive and more productive! Scleroderma has outstayed its welcome like the bride’s cousin’s drunken uncle at a wedding.

Getting serious now, I am pleased to report that my mobility has improved. I still require walking aids/wheelchair and adapted cutlery, but I no longer walk like Frankenstein’s Bride. The itching and pain have not improved much, nor have they worsened. I recently had my first flare up in which skin that had previously softened, nothing like normal skin, tightened up again. My joints, particularly my knees, did the same. As far as I am aware, I still have no internal involvement apart from uncooperative bowels.

Thanks to the ever-persistent systemic sclerosis, I am now officially a pensioner at the age of forty – a lady of leisure if only I were awake long enough each day to enjoy it. I always fancied the idea of being a stay-at-home wife, but not a stay-in-bed one.

Still, scleroderma has introduced me to amazing people in the United Kingdom and elsewhere. I joined the Scleroderma Society here, and host meetings for other sufferers in my area. Since posting my story on the ISN web site, I have been privileged to receive many encouraging emails from wonderful people all over the world. Long gone are the days when I felt like I’d become one of “THEM,” transported into a 1950’s black-and-white sci-fi movie in which I was desperately searching for other “THEM.” I now know that we are everywhere. The invasion has begun, and my journey continues.

~ Update 07-31-09 ~

Well it's been about a year since I updated you all on my fun 'n' frolics with mr Scler O Derma.

Two years in and I am a fully fledged sclerodermian! I have joined the sclero gastro club with reflux and esophageal motility issues. I have also been hazed into the internal organ involvement club with scleroderma induced changes to my heart. As yet they don't seem to effect function but further tests are required to confirm this.

Mobility is still an issue but I am amazed how well I have adapted to having the typical sclerodactyly hands. Nothing says scleroderma like a deformed hand or two.

Fatigue is an issue as always, my record is 20 out of 24 hours viewing the inside of my own eyelids.

I decided to get more involved in all things sclero so have become a trustee, webmaster and local contact for the Scleroderma Society UK and a Support Specialist with ISN. As a result I have met the most wonderful people, clearly scleroderma is a discerning disease picking only the best people who are funny, tenacious, and very determined.

I have been asked to speak about handling adversity, apparently I do it well. Any sclerodermian could do this because we know adversity by name and continue to overcome it in style.

Take care.