Raynauds Scleroderma Global Patients: May 2017

Alice Martins Correia, Switzerland,

June Scleroderma Awareness Month 2017 Patient Profiles
Raynaud's, Autoimmune Rare Disease

Alice Martins Correia, Switzerland

Name: Alice Martins Correia

Location: Geneva, Switzerland

Diagnosis: Diffuse Systemic Sclerosis (diffuse scleroderma) and Raynaud’s

Year of diagnosis: 2002

Age at diagnosis: 40

Where / who diagnosed you?

My hands were very painful.

I went to my family doctor and he said it was osteoarthritis and sent me to a doctor in rheumatology and sport medicine.

When she saw my hands, she said ‘I do not think it is that. We must do some tests’.

These included - cappillaroscopy, scan of my lungs, abdominals, MRI, echocardiography, echo of the thyroid and many blood tests.

When all the results came back, I was referred to Professor Chizzolini, where he said ‘you have very aggressive form, of scleroderma’, and I say to him, ‘I have a sclero what?’

What were your presenting symptoms?:

Blue hands

Breathing difficulties

Fatigue, joint pains

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

In one month my life was completely changed.

I began with these medicines:

6 doses of cyclophosphamide (Endoxan) between November 2002 and April 2003.

Aziaztriopine (Imurek) until May 2007.

Aspirine Cardio, Acid Follic, Eutyrox, Cosaar, Prednisone, Pariet and Calcimagon D3.

Current reality:

Now I'm taking:

Prograf (0.25mg) every three days - Anti Rejection tablet

Cellcept 2g per day

Eutyrox 75ug per day

Parriet 20mg per day

Prednizone 5mg per day

What are your 3 biggest current challenges due to your diagnosis?

Maintain my new lungs in good health

To not have digital ulcers

Breath and walk normally

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

I do not think so much about my illness, I have a nice family and good friends who help me.

What are your 3 wishes for the future?

I don't have so many wishes for the future - I live my life every day and I take the day one by one.

Alice with her husband

To read a 2017 update about the superhuman Alice, Click here

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

Here is her presentation, as well as, you can watch her, here

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

Alice can be contacted on facebook:

Alice Martins Correia, Geneva, Switzerland

Huge thanks to Alice for sharing her scleroderma experience and hereby, starting the Scleroderma Awareness Month 2017 Patient Profiles campaign.

During Scleroderma Awareness Month 2016, I focussed on the lungs and scleroderma on DAY 17

Here is the 2016 Index

To read more about this year’s Patient Profiles campaign, 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: