Raynauds Scleroderma Global Patients: Roy Louden, USA. June Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 15

Roy Louden, USA

Patient Profiles DAY 15

June Scleroderma Awareness Month 2017

Raynaud's, Autoimmune Rare Disease

Roy Louden, 4th July 2015, Diffuse Systemic Sclerosis, Raynaud's patient

Name: Roy Louden

Location: Orlando, Florida USA

Diagnosis: Systemic scleroderma diffuse

Year of diagnosis: 2005

Age at diagnosis: 45

Where / who diagnosed you?:

Primary care general practitioner.

What were your presenting symptoms?:

Raynaud’s, thick discolored skin areas, muscle weakness

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

Diagnosis made from skin biopsy. Follow up muscle biopsy and very high CPK confirming muscle break down.

Current reality:

In remission since 2012.

Please describe your current symptom involvement and management, including any treatments taking and taken.

Being in remission I am only dealing with the damage done. Bad heart with 2 meds and pacemaker. Hands just adapting and overcoming, stretching.

What are your 3 biggest current challenges due to your diagnosis? (eg calcinosis, digital ulcers, disability etc)

Hands have loosened but still cannot turn palms up.

Have no strength to run or swim.

Digestion, while much better, will never be right with 9 feet of small intestines gone from resection in 2011 removing perforated small bowel – DO NOT ignore constant bloating.

What are your 3 top tips for living with your diagnosis?

Eating/drinking ONLY natural stuff.

Stay as active as possible.

Meditation/positivity.

What are your 3 wishes for the future?

A cure for all

Stem cell muscle regeneration for me

A move to the beach

To read more about Roy, Click here

To read about Roy’s diet, Click here

To watch Roy’s video of him on a Jet Ski, Click here

To watch Roy’s parody of The Terminator movie, Click here

Huge thanks go to Roy for sharing his scleroderma reality and experience for scleroderma awareness month.

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: