Tuesday, 7 June 2016

DAY 7: Raynaud's phenomenon, Scleroderma Awareness Month 2016, Autoimmune Rare Disease


DAY 7  Scleroderma Awareness Month - Raynaud's phenomenon



Raynaud’s can be an initial symptom in the autoimmune patient (MS, Lupus, Fibromyalgia) and, which of course, includes scleroderma. 




It is important to emphasise that Raynaud’s can also present on its own, without any autoimmune involvement. 



The current understanding is that, if a patient has scleroderma they will more than likely have Raynaud’s also. 


However, Raynaud’s symptoms are not a direct evidential link to autoimmune disease and the relevant medical tests must be carried out to determine this. 

Raynaud’s can affect many areas of the body, as the above image shows. 

Attacks can last for seconds / minutes / hours. 

The colour change to the affected body part, indicates lack of blood to those areas, which, upon its return, feels similar to red hot, fine needles being stabbed in the area. 

This makes for the perfect ulcer forming environment, and should an ulcer(s) be present, Raynaud’s will make them even worse and impair healing. 

There is currently no cure, with treatments designed to suppress the symptoms, accompanied, usually, with the unwanted side effects of blood pressure altering drugs. 

Fluoxetine is known to be used ‘off license’ to treat Raynaud’s symptoms. As indeed, so is Sildenafil, and is also used as an option. 

Personally, I did not tolerate either of these drugs, and after 3 bouts of Iloprost, I made a solemn promise to myself that I would never have it again, due to the intense side effects, including my head feeling as though my skull was going to explode, and oversensitivity to light. 

I accept that these treatments do work for some patients, but not for me! 

I have found that prevention is better than cure when trying to manage my Raynaud’s symptoms. 

I wear lots of layers as well as, gloves and Ugg boots all year round. 


Hottest day of 2013 - I need to wear Ugg boots and gloves




I take Bosentan 125mg twice a day, which helps with my symptom control, and it has reduced the number of digital ulcers to my hands and toes, which has been most welcome! 

My hands are the best that they have been since diagnosis, I am delighted to say…… I have gloves for every occasion and look like an eskimo all of the time!!





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        



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

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. Thank You. 
#HOPE 


 

Last Update: April 2018




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