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. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  




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.



  

Scleroderma Family Day 2020

25th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME


09.30 – 10.00           Registration and Coffee

10.00 – 10.20           Welcome                                                   Dame Carol Black
                                                                Prof Chris Denton & David Abraham

10.20 – 10.40           What is a Biopsy?                                    Dr Kristina Clark

10.40 – 11.05           Dental aspects of Scleroderma            Prof Stephen Porter

11.05 – 11.25           Gastrointestinal problems –                       Dr Fiza Ahmed
shedding new light on old problems 

11.25 – 11.50           Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15           Scleroderma cohort studies –                  Dr Francesco 
                                 ‘Learning from our patients’                     del Galdo

12.15 – 14.15           LUNCH BREAK – see below  

14.15 – 14.45           25 years of progress –                          Prof Chris Denton
from ‘black box’ to ‘positive trials’

14.45 – 15.15           International speaker –                            Dr Madelon Vonk
                                 Scleroderma Management in Netherlands

15.30                        Raffle


Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials                                                                  Rachel Ochiel and team
National Institute of Health Research                            Christine Menzies
Drug Information / monitoring                                        Pharmacy
Massage                                                                         Keith Hunt MBE
Pulmonary Hypertension Education / nursing            Sally Reddecliffe/Adele Dawson
Rheumatology Laboratory                                          Research Laboratory Staff
Scleroderma Education / Nursing                          Louise Parker/ Joseph Cainap
Thermography                                                                Dr Kevin Howell
SRUK                                                                             Ollie Scott
Sjogren’s syndrome                                                       British Sjogren’s Society 


To Read My Articles:  

Gift in My Will, Click here 

Planning for the Future, Click here  

 


Rare Disease Day:   

Rare Disease Day 2020:  

  

Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here  


 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  here   


 
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here  

  


 
Rare Disease Day 2019: Leaving a Legacy Gift, Click here       



Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here  

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

2017 Rare Disease Day Medical Research  


2016 Rare Disease Day Patient Voice   

2016 Rare Disease UK Parliamentary Reception       

  

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.


To read about medical research at the scleroderma unit, Click here   

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 overall. 

For optimum patient care, 3 hallmarks preside:







supported by a medicaldream team’ 
(expert specialist as the clinical lead).

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.   


To read my articles:  

Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, Click here
 
NIHR Video: 'My Experience of Clinical Trials', Click here 

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

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here  

2018 Scleroderma Awareness Raising and Medical Research, Click here    


SCLERODERMA:

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- How to Diagnose, Click here        

'All you need to know', 2016 Awareness Video, Click here    

Global Patient Profiles 2018 Video, Click here    


Unmet Medical Needs, Click here     




Calcinosis Video, Click here    


The scleroderma tooth fairy, Click here     


Skin Cancer and scleroderma, Click here   

 

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019



This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Read more, here.    

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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.  

I am truly humbled and inspired by their work ethic and commitment to their patients.  

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 original diagnosing doctor, that I was looking at a 15month prognosis. 
 


  

Chat Magazine May 2019

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. Read more, here    


  

World Scleroderma Day 2018, Click here  

World Scleroderma Day 2017, 29th June, Click here    

World Scleroderma Day 2016, 29th June. Origins of the date, Click here   

World Scleroderma Day 2015, 29th June.  


James Carver, myself, Prof Chris Denton

I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

Raynaud's

October:  
Raynaud's, Click here  
 
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here   

To view Thermograph Video, Click here    

To view Thermograph image, Click here    

   
My Raynaud’s reality, Click here     


The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here   

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research  



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


Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here    
 


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

  

  
Last Update: Feb 2020.       


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

#SclerodermaFreeWorld  #RaynaudsFreeWorld  












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