Saturday, 24 March 2018

Sharon Harris, UK. AUTOIMMUNE DISEASE AWARENESS MONTH, 2018. Scleroderma, Raynaud’s, Autoimmune Rare Disease

 Sharon Harris, UK
AUTOIMMUNE DISEASE AWARENESS MONTH 2018
Scleroderma, Raynaud’s, Autoimmune Rare Disease


Name and Location: 
Sharon Harris, UK  

Presenting symptoms: 

I had ulcers on my little finger, so my GP gave me chilblain cream. I returned some weeks later, still with the ulcers as well as joint stiffness and tiredness all of the time. I knew something was not right. The GP then referred to me the specialist, Dr Sam.   


Dr Sam told me that I had systemic scleroderma and how did I feel about this. I did not really know what it was, and cracked and broke down. I rang my mum and told her that this was serious.  


I was devastated for a good 2 weeks. I cried every day and still do, as I feel I have a very bleak future ahead of me.


What are your 3 biggest current challenges due to your diagnosis?

My hands are so swollen that I can not grip anything or make a fist. My finger tips are very sensitive and painful with ulcers and calcinosis.




I also have carpel tunnel syndrome which the Occupational Therapist has given me straps for.  


My right foot is swollen, so I have to wear flat boots and fluffy socks. I am no longer able to ‘dress up’ anymore.  


I feel restricted and have to wear gloves all of the time. I can not write or sign my signature anymore. I use a sponge adaptation on pens, to help me hold the pen, as I can not grip it. 

I also have adaptations in the kitchen for tins and bottles.  

I have a raised toilet seat, as well as hand rails and a walking stick to help me move about. 

I find everything tiring and an effort to do anything, so I will put most things off. 

I am limited to a weekly shop with my mum. If I make the effort for special occasions, I will suffer for days afterwards.    

I feel as though I am moaning all of the time and so I stay away from socialising as I do not want to get into conversations, as I am in too much pain.  

The constant neuro-muscular pain makes it difficult for me to sleep, adding to my continual tiredness.  

I also worry about the impact that this disease is having on my mum and son, as I do not want to cause upset to my family.


What are your 3 wishes for the future? 

A cure will be found SOON

I wish all fellow patients well. I have found great support in the social media groups and have been encouraged by other patients’ stories.

I have a sparkling future ahead, with my lovely little dog, Mackey, and my family.



To read more about Sharon’s Scleroderma, Raynaud’s, Autoimmune Rare Disease reality, Click here  


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  
  





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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