Raynauds Scleroderma Global Patients: DAY 23: Kidney / Renal, Scleroderma Awareness Month 2016, Raynaud's, Autoimmune Rare Disease

DAY 23: Kidney / Renal

Scleroderma Awareness Month 2016

Raynaud's, Autoimmune Rare Disease

DAY 23 Scleroderma Awareness Month:
KIDNEY / RENAL Management

As discussed in DAY 3 Scleroderma Awareness Month 2016 – Scleroderma can affect all body parts.

I also focussed on the Kidney and Renal involvement for DAY 15 Scleroderma Awareness Month 2016 post, where I focussed on the symptoms of kidney involvement and kidney crisis.

Today’s image focusses on the risk factors and treatments used to attempt to control the symptoms when the kidney is affected in scleroderma.

Kidney involvement used to be the main contributor to death in scleroderma patients.

However, due to improved understanding and treatments being made available this is now no longer the case, with lung involvement now the main contributor to life threatening complications. DAY 17 Scleroderma Awareness Month 2016.

As can been seen in the image, there is no cure as such, for kidney involvement, as the treatments target symptom suppression. If the relevant kidney bio-markers are prevalent, some patients may benefit from taking ACEi (Angiotensin Converting Enzyme inhibitor) drugs to try and prevent further organ damage.

This class of drugs have improved the outlook of the scleroderma patient with kidney involvement significantly.

In the event that a patient has experienced irreversible kidney damage, a transplant may be a final option, as by the indicated guidelines.

To see the UK Scleroderma Study Group Guidelines, Click here

Over the last few decades, clinical trials have focussed on better understanding of the mechanisms and processes involved in the scleroderma affected kidney, thereby, improving life expectancy and quality of life for this type of patient.

The Zibotentan Better Renal Scleroderma Outcome Study (ZEBRA) is currently recruiting scleroderma patients with kidney involvement. To learn more about this, Click here

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

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

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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