Raynauds Scleroderma Global Patients: DAY 8: Raynaud's Management, Scleroderma Awareness Month 2016, Autoimmune Rare Disease

DAY 8: Scleroderma Awareness Month: Raynaud's Management

Scleroderma, Raynaud's Autoimmune Rare Disease

Today’s post shows the management of Raynaud’s as advised by the Scleroderma Study Group at The Royal Free hospital in London. UKSSG

I discussed in detail, yesterday, DAY 7, Raynaud's, and some of the practical realities of managing Rayanud’s, as there is no cure.

The drugs used are targeting symptom suppression as opposed to reaching the underlying cause.

Most of these drugs are accompanied with the side effects expected with blood pressure lowering drugs, namely, dizziness, nose bleeds, light head etc.

Fluoxetine is known to be used ‘off license’ to treat Raynaud’s symptoms. As indeed, so is Sildenafil, used as an option.

Personally, I did not tolerate either of these drugs, and after 3 bouts of Iloprost, I made a solemn promise to myself that I would never have that again, due to the side effects.

I accept that these treatments do work for some patients, but not for me!

I have found that prevention is better than cure when trying to manage Raynaud’s symptoms. I wear lots of layers as well as gloves and Ugg boots all year round.

I take Bosentan 125mg twice a day, which helps with my symptom control, as well as, it has reduced the number of digital ulcers to my hands and toes, which has been most welcome!

My hands are the best that they have been since diagnosis, I am delighted to say……

I have gloves for every occasion and look like an eskimo all of the time!!

Living the dream, hoping for a cure!!

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

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

Raynaud's, Click here

World Scleroderma Day 29^th June 2016, Click here

World Scleroderma Day 29^th June 2017, 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

More unmet clinical needs

Rare Disease Day 2016

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

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.

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