‘I h I had WRINKLES INSTEAD’
Claudia’s smooth skin is just one part of a devastating condition
Typing in the of ce one day, my ngers went icy. Throbbing with pain, they turned blue, red, then white.
It kept happening, so two weeks later, I saw my doctor.
He said my blood vessels were over-reacting to the winter cold and diagnosed me with Raynaud’s disease, which affects circulation.
But then my joints, including my wrists, grew stiff. So I was referred to a rheumatologist.
‘You have scleroderma,’ he said, after tests. ‘It’s a chronic autoimmune and rheumatic disease, where your body produces too much collagen, causing your skin to become thick and hard.’
He said it could also harden tissue around my lungs, kidneys and heart.
‘Is there a cure?’ I asked. ‘I’m sorry, but you have only 10 to 15 years to live,’ he told me.
My mum Nadia, then 48, who was with me, went white. I was only 30.
Medications to reduce my symptoms all failed and my mobility decreased. I also lost my hair and shrunk from a size 10 to a size six.
At 32, two years later, I had to quit my job in organisational psychology.
Seeing specialists, I was carried from the car to my appointments by my dad Walid, then 60, and younger brother Sam, 27.
One specialist I saw suggested a stem cell transplant at St Vincent’s Hospital in Sydney.
However, he added the procedure was very risky.
‘So this cure has a chance of killing her?’ Mum cried. ‘There’s no way she’s having it!’
But as time passed, I just became weaker.
‘If I don’t have the transplant, I’ll die soon,’ I wept. So Mum and Dad tearfully agreed.
It began with chemo, then a machine extracted bloodforming stem cells that were regenerated and returned to me. After the transplant, I got a potentially lethal blood clot in the central line leading into my neck. Mum never left my side, sleeping by my bed.
After six weeks, I’d built up enough healthy bone marrow to be discharged.
Incredibly, over the next year, my joints and skin began softening.
Six years on, I’m alive and back at work. And I wrote a book to raise awareness.
Now I type with my long ngernails. My ngers remain claw-like, as the skin there, and on my face, never softened.
And I’ll never wrinkle. ‘You’re lucky. Women spend a lot on Botox for skin like that,’ some people say, but I’d swap my autoimmune disease for wrinkles any day!
I’m very grateful to have a second chance at life.
‘A Life With Uncertainty’, by Claudia Sultan, is available now.
‘If I don’t have the transplant, I’ll die soon’