Saturday, 3 February 2018

The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer

Living with a rare disease where the cure and cause are unknown, is daunting in every way imaginable. For me, managing my symptoms, combined with fatigue, mobility challenges  and my diet nutrition / diet regime  ingredients is a full time job! 

I know that I am blessed to have made it to my 20th year anniversary of living with scleroderma and Raynaud’s.

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.  
Aug 2017

One of my biggest symptom challenges has been the maintenance of my  skin 

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.  

An article highlighting such, is published within the current copy of the Journal of Scleroderma and RelatedDisorders.  

This article concludes that the RNA polymerase subtype, shows to be more susceptible to cancer induced autoimmunity. Yipeee… that’s me! 

In 2016 I was delighted to hear Prof Chris Denton advise me that my ‘Skin is now cured from scleroderma’

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. 

This combination, 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.   

The theme to this years Rare Disease Day is Research.  
2017 Rare Disease Day Flashback   

Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –  
Medical Research provides the brightest light 
for the illumination of the rare disease patients’ plight. 

Living the dream, scleroderma style. 

Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London where 100% of all of your monies will be used for medical research purposes only. Thank You.
#SclerodermaFreeWorld #RaynaudsFreeWorld   

An edited version of this article was published in my Column  with Scleroderma News.
January 2018 

To read my articles:  

Importance of an early diagnosis, Click here 

Taking Part in Clinical Research Trials, Click here

Expert Specialist Centres, Click here 

My Skin is Cured from Scleroderma, Click here 

UK Guidelines for Managing and Treating Scleroderma, Click here  

World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click  here     

Please donate to help fund medical research at The Scleroderma Unit where 100% of all of your monies will be used for medical research purposes only. Thank You.

 Living the dream, hoping for a cure 
#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief 

Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates  



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