Saturday 25 June 2016

DAY 25: Pain, Hair Loss, Scleroderrma Awareness Month 2016, Raynaud's, Autoimmune Rare Disease

DAY 25: Pain, Hair Loss   

Scleroderrma Awareness Month 2016 
Raynaud's, Autoimmune Rare Disease

DAY 25  Scleroderma Awareness Month: 


Pain is a universal symptom with disease and illness, and especially so with the autoimmune arthritic conditions. 

I can not remember the last day whereby I did not have any pain. As with most of the symptoms with scleroderma, no two patients will present with the exact same set of symptoms. 

I know other patients with the diffuse subset diagnosis who experience little pain.
For me, the symptom of pain, totally dictates my day to day life, along with fatigue and mobility challenges. 

I focussed on fatigue in DAY 14  Scleroderma Awareness Month 2016. 

I focussed on mobility in Day 20  Scleroderma Awareness Month 2016. 

I have tried all of the recommended pain killers / analgesics, with little success other than the stronger the drug, the higher chance of projectile vomiting and mind fog. 

I have therefore learnt to try and ‘manage’ my pain to a tolerable level. This involves doing the bare minimum exertion as possible for each day. 

Along with, time management by way of, being horizontal for the days leading up to a ‘big’ day out. 

For example, travelling to London (three hour car / train journey each way) is a ‘big’ day out for me, which will be followed with ten days of feeling even more fragile than ‘normal’ scleroderma-like fragile. 

Living in constant chronic pain is a challenge and a life changer, presenting under an invisible guise. 

I am no longer able to participate in many activities which the ‘pre-diagnosis me’ enjoyed. And, sadly, this list includes alcohol. 

I would never have believed ‘back in the day’ that I would be ‘booze free’ of a weekend! I think that the last time I had alcohol was on my fortieth birthday, 3 years ago. 

I hasten to add that these years of sobriety were preceded by at least a decade of ‘binge drinking’ on an impressive scale, which was eventually brought to a halt by the effects of scleroderma and its medications, to my body. 

Although the alcohol numbed my bodily pain momentarily, the after effects of when the toxins were being expleted from my body were severe, and it took days / weeks to feel marginally better. 

During this time, I found that my mind was not particularly helpful with the thoughts that I was having in relation to the severe level of pain which I was experiencing, as well as, my perspective on the total hijacking of my body and the destruction of my personal life plans. 

So I chose to stop the drink, as I want to feel good, and after all, alcohol is a natural depressant, which I certainly do not need, given, a scleroderma diagnosis. 

Pre diagnosis, my hair was a lot thicker, shinier and stronger than it is now. 

However, I am grateful that I still have my hair, even though hair loss remains a daily occurrence, as can be seen by my scleroderma teal hairbrush, in the above image. 

My hair loss has slowed since I no longer take any chemotherapy or immunosuppressants to manage my scleroderma symptoms. 

I ceased the 2g daily dose of mycophenolate mofetil which I took for five years, on the day I achieved my personal dream of being a self employed barrister on March 1st 2004. 

Eight weeks later, I had to accept that I had to change my lifestyle to respect my symptoms, forcing me to relocate to my family home town of Southport in the UK. 

My full time job is managing my symptoms to a tolerable level. 

I am now 12 years chemo / immunosuppressant free which I am delighted about. 

I choose to focus on the things which I can do and make me feel good, even when my tin man body which feels as though it has been wrapped in barbed wire and dipped in concrete, has other plans for day. 

One day, very soon, I want to be able to say ‘I am Scleroderma and Raynaud’s free’ and that, we all live in a scleroderma free world – imagine that! 

An edited version of this article was published here, in my Column with Scleroderma News. 
June 2016. 

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      

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       

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      

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. 


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

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

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. Thank You. 


Last Update: April 2018

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