Tuesday, 19 June 2018

Sheryl Bishop, USA. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Sheryl Bishop, USA.
Awareness Month 2018. 
Raynaud's, Autoimmune Rare Disease.
Sheryl Bishop, USA

Name:           Sheryl Bishop 

Location:       Heights,  CA USA 


Diagnosis:     Systemic Diffuse Sclerosis 

Year of diagnosis:    2005 


Where / who diagnosed you?:     

Hand specialist in West Covina CA USA  


What were your presenting symptoms?  

Both hands would turn purple.

Started swelling.

I thought it was Carpal Tunnel Syndrome, from being a Dental Hygienist.  


How long did it take for you to be diagnosed after first symptoms?  

About 6 months. 

I was sent to a hand specialist. 

He ran all tests for Carpal Tunnel in both hands, while referring me to a rheumatologist because he really didn't think that's what I had.

All tests came out negative for Carpal Tunnel. 

I went to a Rheumatologist, who ran blood work. 

And Bam........Scleroderma antibodies.

She then referred me to Dr Clements at UCLA.  


2017 reality: 

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 Sclerodactyl 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 top tips for living with your diagnosis? 

Faith.
  
Hope.
  
Helping others.


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. 
June 2017.   



2018 UPDATE:


As of today my Scleroderma symptoms have progressed some.

I'm going on 13 years, in July, since diagnosis.

Current SYMPTOMS:

Heart burn, Acid Reflux, Pulmonary Fibrosis, Gastroparesis, Digital Ulcers, Raynaud’s, Calcinosis, Skin tightening, resorption of fingers.


2018 RESEARCH:

No Research studies in 2018.

I took part in one in 2010 for Digital Ulcers.

It was a double blind trial where you take a pill orally for 20 weeks.

At the end of that time you are given the real medication.

When my 20 weeks were up, I was given the real medication and found out very quickly I was on the placebo. I couldn't tolerate the drug and I stopped the trial.

My doctors are at UCLA and so was the trial. Travel distance was 24 miles and took 2 hours to get there because of traffic one way.


In 2017, I participated in a study for Pulmonary Fibrosis.

It was an IV Infusion and double blind. The first year, you go once a month for about a two hour infusion. Then the second year you are given the real medication.

I was in the trial for about six months and didn't feel well so I was taken out of the study. Don't know what I was on, Placebo or the real medication because the trial is sill going on. Again, same traveling situation.

Same place, distance, and time. I am done with trials for now.

Both trials didn't agree with me and I felt very nauseous.

But the positive side is you do meet many lovely people that you would never have met.

Trials are necessary in allowing research to be done to help find a cure.

Many successful medications we use now wouldn't be available if it weren't for these trials.

A double bonus is at the end, if the medication proves to do what they want, the patient gets it for free. Not sure if there is a time limit or not.

So all in all, my experience was positive and negative.

Maybe I will try another time in the future, depending on what it involves.


IN BETWEEN MEDICAL APPOINTMENTS:
 
I like to try and exercise, do crafts, and think of ways I can help others with Scleroderma. Whether it be a fundraiser, (which I've only done one so far), sit with a friend during an infusion, crafting, movies, or reading.  


Huge thanks go to Sheryl for sharing her scleroderma reality and experience for Scleroderma Awareness Month, and HUGE thanks for all that Sheryl does for the global scleroderma community worldwide. 

Please Like her Facebook Page 'Sclero Sisters Fighting for A Cure', which she hosts with another scleroderma super-heroine, Aly Proano, Click here   


 
 
 
 
To read my articles: 
 
Current Unmet Clinical Needs 2018, Click here 
CALCINOSIS, Click here  
GUM RECESSION, TOOTH EXTRACTS, Click here 
SOFT TISSUE, ULCERS, Click here  
TELANGIECTASIA, Click here 
SCLERODACTYL HANDS, Click here   
INVISIBLE DISABILITY, Click here 
RAYNAUD'S, Click here 
GASTROINTESTINAL, Click here

Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo.
  
'Scleroderma Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here   
 
Global Patient Profiles Campaign Index, Click here  

Importance of Medical Research and Awareness Raising, Click here
NIHR Video: 'My Experience of Clinical Trials', Click here   
 
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here 
 
'Being your own awareness advocate', Click here
 
Scleroderma Awareness Month Flashback 2017, Click here 
Scleroderma Awareness Month Flashback 2016, Click here 
My 2016 Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
 
2016 Campaign Video, Click here  
 
March 2018 Autoimmune Disease Awareness Month, Click here  
 
 
World Scleroderma Day 2017, 29th June, Click here 
World Scleroderma Day 2016, 29th June. Origins of the date, Click here 
World Scleroderma Day 2015, 29th June. 

James Carver, myself, Prof Chris Denton

I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 


To view my article 'Why Global Collaboration is Important', Click here

All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as: 


Early Diagnosis 
Expert Specialist Centres 

Access to innovative medicines 

ALL being, crucial factors for best practice management and care.  

 
To read my articles:
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   
This year, I am celebrating 20 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. 
Sept 2017

Prof Chris Denton and I, 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. Read more, here
For latest updates follow: 
Facebook Page:
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. No wages or admin costs. Thank You.
#HOPE 

Last Update: June 2018
   

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