Tuesday, 20 March 2018

Sheryl Bishop, USA. AUTOIMMUNE DISEASE AWARENESS MONTH, 2018. Scleroderma, Raynaud’s, Autoimmune Rare Disease

Sheryl Bishop, USA
AUTOIMMUNE DISEASE AWARENESS MONTH 2018
Scleroderma, Raynaud’s, Autoimmune Rare Disease


Name and Location: 
Sheryl Bishop, USA 


Presenting symptoms:

Both hands would turn purple. Started swelling. I thought it was Carpal Tunnel Syndrome from being a Dental Hygienist.


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

As of today, I have Raynaud’s Phenomenon with ulcers which when bad, I receive Flolan infusions. I take Adcirca and Tracleer.   

I have GERD confirmed by Mannometry, Bravo Ph test, Endoscopy, Swallow tests. Treatment with Omerapozole 40mg 2x daily and try watching my diet.  

I have skin tightening. Very little Sclerodactly symptoms.  

Some joint pain recently. I take Myfortic 720mg 2x a day.  

I have pulmonary fibrosis which they want to start me on rituximab infusions. Don't have details yet. 

I've had a right heart cath. No Pulmonary Hypertension.   

Starting with some clubbing of fingers. I had a left hand Digital Sympathectomy for ulcers.  

Also have Hashimoto's Disease take150mcg a day.


What are your 3 wishes for the future? 

To help find a cure, be cured, and that Scleroderma, and all coexisting auto-immune diseases are non existent. 

This is a very terrible disease which does not get enough recognition. 

It is invisible, therefore, if you dont look sick on the outside many people have no idea how serious and involved our internal organs are, which in many cases are life threatening.   

Many people have lack of compassion also, because it's not always visible on the outside.  

Fatigue and pain causes us to miss out on many activities by cancelling.  Eventually you stop getting invited. I feel this also causes depression and anxiety.   


"A meal without wine is like a day without sunshine." Italian Proverb Love, Sheryl 


To read more about Sheryl’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





No comments:

Post a Comment