Raynauds Scleroderma Global Patients: Maria Alice Martins Correia; Geneva, Switzerland, Scleroderma Double Lung Transplant Survivor, Raynaud's, Autoimmune Rare Disease

Maria Alice Martins Correia; Geneva, Switzerland

My name is Alice and I am 55 years years old.

In 2002 I was diagnosed with the rare auto-immune disease known as "Systemic Scleroderma Diffuse".

On 1st June 2012 I underwent a double pulmonary transplant.

The first year was very difficult because of various complications, after that and until today, my health is very much improved.

At my last medical appointment in December 2016, I was delighted that my doctors said that there is no sign of reactivation of my Systemic Scleroderma. My Raynaud’s phenomenon is always here, but manageable.

Thankfully, my breath is stable and I am always very active. I walk one and a half hours per day and I also do fitness classes.

I am also delighted that the Doctors have said that there is absence of myocardial and renal impairment, with my strength and sensitivity now normal. I do not present with ‘dry eye’ syndrome and I use artificial tears very rarely.

But every morning I am like a old car, it must heat up before I can walk, especially the right knee, and then, after that, it goes very well.

During the month of May I will be spending a week at the University Hospital of Geneva (HUG) for a complete assessment, five years after my double pulmonary transplant.

I very much hope that everything will go well, and that there will continue to be no rejection.

At the end of May I will give you news.

Wishing a good health to all.

Alice

To read more about Alice's day to day reality, Click here

To read about Alice’s double lung transplant, Click here

To keep up to date with Alice and the Scleroderma Society of Switzerland follow their facebook page, Click here

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

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, 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: