Monday, 21 May 2018

Living The Dream, Scleroderma Style: In Between Medical Appointments, Raynaud's. Autoimmune Rare Disease


Living The Dream, Scleroderma Style: In Between Medical Appointments

Living with a systemic, chronic, degenerative disease, where the cause and cure still remain unknown, makes for a diary filled with medical appointments. 

In between which, symptom management is a full time job, in itself.

I have a strict daily routine in place, in an attempt to minimise the severity of my ongoing symptoms.

However, as every patient will surely agree, no day is exactly the same in relation to the Pandora’s Box, which the autoimmune rare disease, scleroderma, diagnosis brings.

My daily routine incorporates my diet, skin, Raynaud’s and ‘tin man’ demands.

Even after 20 years, it still remains an ongoing challenge for me, to attempt to minimise my symptoms.

The severity of my Raynaud’s involvement, keeps me under house arrest all year round. 




My sensitivity is such, that the smallest decrease in temperature, regardless of how warm it actually is, will trigger an attack in my hands and toes. My ears and nose may also become involved. 

Combined with calcinosis and digital ulcers, this makes for a very painful and debilitating reality. I highlighted more about this in my article for Rare Disease Day 2017, the clinical unmet needs.  


The British Society for Rheumatology (BSR) held its annual conference last week in Liverpool.

Sadly, I was unable to attend due to a relapse with my shingles pain, and a resilient digital ulcer on my right index finger, which has been in situ since March!  



Two courses of flucloxacillin have just about cleared the infection, bringing along an overgrowth of candida in my gullet. The skin has still not healed and the slightest touch sets off the most excruciating pain.

A thick, self made, padded bandage with minimal adhesive helps to protect the very tender, thin, red raw skin.



However, I know that when it comes to digital ulcers, I am very lucky, even though their pain and management is extremely trying and soul testing.



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


Please include UK patient Deani in your prayers, as she is currently undergoing treatment for digital ulcers and necrotic tissue which has moved up in to her arm.

Over the years I have learnt via experience that should I push my body too much and not respect the demands of the multi complex symptoms, my body will protest with a vengeance. With fatigue being a constant, unwelcome, companion.

I was particularly encouraged to see that fatigue and sleep were subjects included within the recent BSR schedule. Along with several sessions on Systemic Sclerosis, sharing the most recent data.

I was extremely sad to not be able to attend the conference, especially as it was practically on my door step! However, as a ‘seasoned’ patient, I know that I must accept: my symptoms dictate. As well as, the difficulties of travelling with an invisible disability.

I have written about the Few Highs and Many Lows of living with this diagnosis, previously.  



Sadly, the lovely Maureen Schotterer from USA, was called back to her maker last week. Please include her husband George and her family in your prayers.

There are only a few weeks remaining, until the highlight of our year as patients – June Scleroderma Awareness Month, and 29th June, being, World Scleroderma Day.



There are many projects already in the planning for 2018 awareness #SclerodermaFreeWorld.

I will be updating the global patient profiles, highlighting the urgent need for investment in medical research, to improve our patient day to day reality.     

In celebration for World Scleroderma Day, 29th June, myself and UK patient Liz Leadbetter, have started a forum for sharing pictures / images of any craft or item which a patient has made / created, whilst awaiting in between their next medical appointment.   

We will then collate the images to share on World Scleroderma Day, showing the world how creative our global community is, and raising awareness at the same time. Please get involved! 

Here are some of my examples....   






In the meantime, this Scleroderma Olympian is in training for the Scleroderma Unit Family Day on the 19th May at the Royal Free Hospital. 

Living the dream, scleroderma style.         
          
Follow: 

Facebook Page: Raynauds Scleroderma Awareness Global Patients

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld

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  




An edited version of this article was published here, in my Column with Scleroderma News. May 2018. 
 
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   

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, 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 took 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: May 2018
  

No comments:

Post a Comment