Welcome to my blog - I was diagnosed in 1997, and given a 15month prognosis. In 1998 I became a patient at the Scleroderma Unit, The Royal Free Hospital. The cause and cure to both Scleroderma and Raynaud's remain unknown. Please donate to help fund medical research where 100% of your donation will be used for research purposes only.
#SclerodermaFreeWorld #RaynaudsFreeWorld #RareDisease
Saturday, 3 February 2018
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer
I very much liken the experience to being a Scleroderma Olympian. My gold medal being a day,
whereby, my many debilitating symptoms are kept at a tolerable level.
My ultimate gold medal is to still be around for when the cause and cure
are discovered, #SclerodermaFreeWorld, and although, this may not be of direct
benefit to my body as such, my soul will be more than plenished!
Even after 20years of having had my body hijacked, the multi complexity
of this disease and its consequences, never fails to surprise me, and sadly,
not in a good way. As to what, it is going to present with, next.
2018 has already kept me occupied with attending medical appointments,
whilst recovering from shingles and PTSD. The only medication which I take is
bosentan, and so, I have to have routine bi monthly blood tests. I go to my
local NHS England hospital, in Southport, for this essential follow up care.
One of my biggest symptom challenges has been the maintenance of
I managed to ‘wing’ not being subjected to any invasive skin tests until 2016, where
thankfully, the skin removed from my forehead was ok.
Skin cancer is a genuine and most
serious concern for the scleroderma patient.
I am sure that my 2g daily dose of mycophenolate mofetil, during the
years 1999 – 2004, reduced my skin symptoms of thickening, tightness and itch.
However, around 2013 I developed a red raised skin patch on the side of
my left knee. This was identified by Dr Cate Orteau at the Scleroderma Unit, as
Bowen’s disease and was successfully treated with Efudix cream.
Unfortunately, last summer the red skin patch returned, prompting me to
see my GP, Dr Irvine, who referred me to my local dermatology clinic.
Cumberland Surgery, Aug 2017
I attended the clinic this week, whereby I had the pleasure to meet with
Dr Julio Bassas.
After examination, Dr Bassas advised a biopsy, to rule out any melanoma.
I was gripped by a fear of panic when thinking of my scleroderma patient
logistics, surrounding the whole biopsy procedure.
Namely, my slow wound
healing skin, along with, my current fragile health condition, combined with
the time of year over here in the UK. It is winter, my nemesis season.
therefore, increasing the likelihood of any possible infection and the
antibiotic abyss, which would follow.
After some discussion, with me outlining my ‘special need’ concerns, Dr
Bassas prescribed Efudix cream, with a follow up examination in 8 weeks. At
which, if he were still of the view that a biopsy would be necessary, I
promised that I would be an obedient patient!
I saved Dr Bassas from the ‘chore’ / pleasure of having a selfie taken
with me, as I was not wearing my official ‘HOPE’ t shirt! Replacing it with my
compulsory winter ‘eskimo’ look.
Dec 2016, Royal Free Hospital
This return of my Bowen’s disease skin patch is all part of the
Pandora’s box which encompasses this multi complex rare disease. Where, medical
research is our hope to achieve that ultimate gold medal for the
scleroderma rare disease community.