Raynauds Scleroderma Global Patients: Sheryl Bishop, USA. June Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 20

Sheryl Bishop, USA

Patient Profiles DAY 20

June Scleroderma Awareness Month 2017

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.

Current 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 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 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

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 more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, Click here

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, Click here

INDEX to Scleroderma Awareness 2016 Campaign, Click here

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

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 29^th June 2016, Click here

World Scleroderma Day 29^th 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

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

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

INDEX

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 19^th 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.

1^st 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: