Raynauds Scleroderma Global Patients: Maria Alice Martins Correia - 2016 World Congress Talk. Scleroderma, Raynaud's, Double Lung Transplant Patient. Autoimmune Rare Disease

Maria Alice Martins Correia - Scleroderma, Raynaud's, Double Lung Transplant patient

Maria Alice Martins Correia

My name is Alice, I’m 54years old and I was born in Portugal but now I live in Geneva.

Since 2002 I have suffered from a rare auto-immune disease known as “Systemic Scleroderma Diffuse”. This illness affects the skin, as well as the heart, lungs, gastrointestinal tract, kidneys and muscles. It causes calcinosis, vascular symptoms and circulation problems such as Raynaud’s Phenomenon.

In my personal case, it affects my skin tissues, joints, oesophagus (with reflux) and my lungs with a lung disease called Fibrosing type NSIP.

I also had:

Positive Antinuclear Antibodies

Positive SCL Antibodies

Positive Anticardiolipin Antibodies

Positive Antiphospholipides Antibodies

Today I will speak specifically about my lungs.

Like I said before, scleroderma seriously affected my lungs and because of that I was taking six doses of Cyclophosphamide between November 2002 and April 2003.

After April 2003 I took Aziaztriopine until May 2007. Since 2007 until now, I have been taking Mycophenolate.

But each passing year the infection gradually grew worse. Any strain was unbearable and painful, so much so that I had to leave my job in September 2005.

With the evolution of the disease, doctors began to think about and discuss with me the need to perform a pulmonary transplant in Lausanne.

Thus in November 2011 I was subject to various tests to determine if I could receive a transplant or not.

After all these tests, on February 13^th 2012, I was officially entered on the waiting list for a double pulmonary transplant.

In fact I must admit that this waiting period was the most stressful because we had to be available at any time of the day or night.

Nevertheless, I’m used to saying that despite my misfortune I’m still lucky, because four months later, I was called for the transplant.

At 7 A.M. on the 1^st of June 2012, I went to the hospital in Lausanne where coordinators and doctors were waiting for me. The transplant began at 7 P.M. the same day.

The days which followed, especially the first month, are confused in my head, because of various complications related to bacterial infections, viruses and pneumothorax problems.

This was accompanied by heavy medication which caused me to sleep most of the time, and put me into a state close to a medically induced coma.

After a month, I was transferred to the hospital in Geneva, where unfortunately I had to stay another three months owing to multiple infections.

In the hospital, I was lying on my back all the time due to the drains and because of that I lost a lot of my muscle mass.

I could not walk.

For me, the hardest thing was not the pain or the infections but the fact that I was no longer independent.

During my convalescence I was dependant on the nurses for everything (going to the bathroom, talking a bath, eating even cutting my meat).

By mid-September, though, I was finally out of the hospital I went home with a walker, a wheelchair and also electrodes for stimulating my muscles.

As a joke:

I used to call my walker “My Harley Davidson” and my wheelchair “My Mercedes”.

At home I was helped by a nurse who changed my bandages and gave me medicine. A lady also came to house-work for six months.

Although I used the wheelchair until the end of December, in January 2013 I began to recover motricity in my legs despite some muscular weakness.

I could walk again.

After my six-month check-up the doctors told me that for now there was no sign of rejection and everything was gradually returning to normal.

These long months of convalescence now belong to the past. Even though I had these complications this doesn’t mean that it’s the norm.

After all, everyone is different.

For example:

There are people, who remain only a month in hospital, while others like me must stay longer.

But frankly, if I had to redo this operation again, I would do it, because it’s meant a new life for me.

Today life seems much easier although I still have scleroderma and I will have to take many drugs for the rest of my life. I can also report that for the moment the results of the tests for the antibodies are all negative.

Now I can breathe and walk normally.

In May 2014, two years after the transplant I did in two hour the 10km walk of the Geneva Marathon, with my friends from the Swiss Association of Scleroderma.

Every year since 2014 I have participated in a 5km Maradon walk to raise awareness organ donation.

In Conclusion I want to thank.

All my doctors and nurses for their professionalism, kindness and humanity.

My husband and my son for their love and perseverance, and all my friends for supporting and encouraging me all the time

And most importantly I want to thank, with all my heart, the donor and his family for their action and generosity that saved my life.

My motto

Don't look life in the long term

Live day by day

~&~

Each passing day is a victory over the disease

Alice was a presenter at the recent 4^th World Systemic Sclerosis Congress held in Portugal, 2016.

You can watch Alice, here, and thank you to Fesca for making the presentations available:

Alice is an active member of the Swiss patient organisation: Click here

As well as, Alice can be contacted on facebook:

Alice Martins Correia, Geneva, Switzerland

To read a 2017 update about the superhuman Alice, 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

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: