Saturday, 3 February 2018

The Pandora’s Box: Scleroderma, Skin Cancer, Raynaud's, Autoimmune Rare Disease

The Pandora’s Box:  
Scleroderma, Skin Cancer, Raynaud's
Autoimmune Rare Disease 

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 here, in my Column with Scleroderma News.  
January 2018.


To read my articles: 


Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, Click here   

Becoming a Patient Research Ambassador for the NIHR, Click here  

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here


Key Event Dates 2018, Click here     

Importance of an early diagnosis, Click here     

Taking Part in Clinical Research Trials, Click here    


The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here 

Expert Specialist Centres, Click here      

My Skin is Cured from Scleroderma, Click here      

UK Guidelines for Managing and Treating Scleroderma, Click here      

Fatigue, Click here      

Mobility, Click here    

Diet and nutrition, Click here     


Raynaud's, Click here    



World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   


Why Global Collaboration is important to the Rare Disease Patient, Click here      



RARE DISEASE DAY:
The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception 

2017 Rare Disease Day Flashback  

More unmet clinical needs  

Rare Disease Day 2016



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. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

VIDEO



Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - here



The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

Sept 2017


I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman.
I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004. 

1st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis. 

I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

Living the dream, scleroderma style.  


Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  



100% of your monies will be used for medical research purposes only. No wages or admin costs. Thank You.
#HOPE 


 

Last Update: April 2018




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