Monday, 26 November 2018

Scleroderma Skin Cancer and Other Skin Complications. Raynaud's, Autoimmune, Rare Disease.


Scleroderma Skin Cancer and Other Skin Complications. 
Raynaud's, Autoimmune, Rare Disease. 

The skin is the largest organ in the body. It is affected in most scleroderma patients.  



At the time of my diffuse scleroderma (dcSSc) diagnosis in 1997, I presented with extremely tight skin across my chest, arms, hands, face, legs … all over my body.  

My hands and fingers were puffy with tight, itchy, shiny skin and painful joints.  

I was unable to make a fist and could not remove bottle tops, the lids of jam jars, or the like, and had other symptoms (joint pain, gastro-intestinal, pain, lethargy, fatigue... Day 4  Scleroderma Awareness 2016).  



Surprisingly, my Raynaud's symptoms developed later.  



I was given a 15 month prognosis at the time of my initial diagnosis, due to the aggressive progression which the disease was having on my body. 

However, further to 7 years of chemotherapy and immunosuppressants, (I am now 14 years cytotoxic drug free), I still remain in a state of elation, having been told by Prof Chris Denton that ‘my skin is cured from scleroderma’, in November 2016.  

Global Scleroderma Trailblazer Prof Denton and I, Sept 2017.

I have a daily symptom management routine that includes bathing and moisturising my skin.  



For the bath, I use liquid petroleum (Oilatum Plus) and then, after towel drying, I use Hydromol emollient cream all over my body. 



Over the course of the last 5 years or so, I have experienced several skin complications which remain on-going. 
Most recently, I attended a follow up of my appointment for my 'Bowen's patch' saga, which reignited at the start of 2018.The Pandora’s Box of Scleroderma’.   

At that initial referral appointment in January, Dr Bassas, was most concerned to rule out a potential melanoma, advising me that this could kill me. 

I refused to undergo a skin biopsy due to the time of year, as winter is my nemesis season.  



 
I commenced daily application of Effudix cream, a chemotherapy, until a week before my follow up appointment, in March. 

The Effudix cream had caused my skin to inflame and break, bringing pain, and causing discomfort. However, these symptoms subsided after a few weeks.  

On the day of my follow up appointment in March, the skin still remained discoloured, but was now smooth. 
 
Dr Anthony Downs examined the discoloured skin area on my knee and told me ‘Your skin cancer has cleared’. I was stunned and overjoyed, and what’s more – no biopsy
 
I then showed Dr Downs other skin ‘spots’ for him to confirm that these were sun spots, as well as, Actinic Keratosis, on my forehead. 

Post biopsy Sept 2016

Dr Downs reminded me that the medications used to treat scleroderma, carry a potential increased risk of developing skin cancer combined with sun damage. 
 
During my recent follow up appointment, Dr Aamir Meman, was concerned that the 'Bowen's patch' skin area was now presenting as a basal cell carcinoma.  

As, the skin is now showing pinky brown patches. I have some new cream to try - Imiquimod, another chemotherapy cream.       

I know that I am a ‘lucky’ scleroderma patient. 

Lucky, in that, I have minimal internal organ damage. Lucky, in that, I continue to survive. 


Albeit, my full time job is looking after, and respecting my symptoms.  



During the course of my global patient profiles campaign for Scleroderma Awareness Month 2017 and 2018, every patient detailed how Raynaud’s and digital ulcers were a continual problem to them. INDEX    

Other unmet clinical needs, which patients have in common include: 
 
 

I am honored to be a patient research ambassador with the National Institute for Health Research. video.  

I have recently been added to their 'Hall of Fame' article .  
 
Medical Research provides immense hope for #SclerodermaFreeWorld. 
 
Overall, for optimum patient care, 3 hallmarks preside:  

medicaldream team
(expert specialist as the clinical lead).  
 
In the meantime, I continue to remind myself that 'My Job Today is to Simply Get Better', with hope, and my canine diva dream team, as my constant companions.  


October was Raynaud's Awareness Month and my 50 shades of blue 'party trick', time of year.   
 
Recently, I was appointed a Patient Public Voice on the NHS England CRG for Specialised Dermatology

I am delighted about this role, and very much hope to be a valued voice.  

This is in addition to my NHS England CRG Specialised Rheumatology role, and my roles with the European Medicines Agency   
 
Living the dream, scleroderma style.  
 
Follow: 
 
Twitter: @SclerodermaRF  @RaynaudsRf  
#SclerodermaFreeWorld           #RaynaudsFreeWorld  

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. Thank You. 
October 2018.  

 


Living the dream, scleroderma style. 





An edited version of this article was published here, in my Column with Scleroderma News. November 2018.   
 
 
To read my articles: 
 
Raynaud's
 
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  
 
To read My ‘Invisible Disability’ experience, Click here  

  


Facebook Page: Raynauds Unit Royal Free Hospital
  
Twitter: @RaynaudsRf 


SCLERODERMA:

To read my articles: 

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    

This year, 2018, I am celebrating 20 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Sept 2017

Prof Chris Denton and I, 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. 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 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. Read more, here     

Global Patient Profiles Campaign 2018 Index, Click here

Global Patient Profiles Campaign 2018 Video, Click here   

2018 Scleroderma Awareness Raising and Medical Research, Click here  

Importance of Medical Research and Awareness Raising, Click here  

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

Becoming a Patient Research Ambassador for the NIHR, Click here    
  
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here 
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here 
 
'Being your own awareness advocate', Click here
 
Scleroderma Awareness Month Flashback 2017, Click here  
Scleroderma Awareness Month Flashback 2016, Click here  
My 2016 Scleroderma Awareness Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
 
2016 Campaign Video, Click here   
 
March 2018 Autoimmune Disease Awareness Month, 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 MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

To view my article 'Why Global Collaboration is Important', Click here     

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

Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   
Preamble - here
 
 
RARE DISEASE DAY:
The theme to this year's 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  
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.
 
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, 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   

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here  
 
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, 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).

Where, investment in medical research is crucial, to improve the day to day reality, as well as, the long term outlook for the entire global scleroderma community.  

Follow: 

Twitter: @SclerodermaRF  @RaynaudsRf  
 
 
#SclerodermaFreeWorld           #RaynaudsFreeWorld
#IamScience


 
   
#SclerodermaFreeWorld #RaynaudsFreeWorld 

 


November 2018. 
 
Scleroderma Skin Cancer and Other Skin Complications
Scleroderma, Raynaud's, Autoimmune Rare Disease.

#SclerodermaFreeWorld #RaynaudsFreeWorld