Alice Martins Correia, Switzerland,
June
Scleroderma Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease
Raynaud's, Autoimmune Rare Disease
 |
| Alice Martins Correia, Switzerland |
Today is Alice's double lung transplant birthday- 6 YEARS -
HUGE Congratulations,
to you, Alice. Sending lots of welllness wishes for many more years to come.
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 |
Today is Alice's double lung transplant birthday- 6 YEARS -
HUGE Congratulations, to you, Alice. Sending lots of welllness wishes for many more years to come.
HUGE Congratulations, to you, Alice. Sending lots of welllness wishes for many more years to come.
2018 UPDATE:
I have recently been
in the hospital for my routine medical tests, as, I am due to have my annual
report, 6 years after my double lung transplant.
These tests include a
double renal clearness test, a bone scan and a skin control test.
For the moment, all
of my results are ok.
I do not have any
new symptoms.
My medications remain
the same, with a small decrease of the anti-rejection drug, and the anti-reflux
drug.
RESEARCH 2018
Have you taken part in a research trial?
How many trials?
Did you have to travel far?
Would you advise others to take part in
research trials?
I have participated
in two research programmes:
1. Urinary Tract Infection
trial for 3 years
2. Pulmonary Hypertension
trial for 5 years.
During the first 5 years, I am monitored at the hospital and in the 1st,
3rd, and 5th year, I have to do catheterisms to measure the pulmonary tension,
to study the evolution of the disease.
It is like a cardio cather with a tube into a femoral arthery.
I have to say that, is very nice to see all the arteries, veins and
the blood vessels. They look like a tree with is trunk and ramifications!
I did not travel
very far because all of the tests were carried out at the HUG (Hopital Universitaire
Geneve).
I would advise other
patients to take part in clinical trials.
Taking part in medical
research is very important because without these studies the medicine can not
advance as fast, as well.
At the same time,
whilst being a participant, you know if your health evolves negatively or
positively.
In Between Medical
Appointments:
My hobbies include:
Walking in the
nature and near the sea.
Travelling.
Before the World Congress
of Sclerodema in Bordeaux, I realised my BIG dream since being a litle girl - a
trip to Tromso in Norway to see the northern lights.
I also like to be
with my friends, reading and photography.
Alice was a presenter
at the 4th World Systemic Sclerosis Congress held in Portugal.
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 2018 Patient Profiles campaign.
During Scleroderma
Awareness Month 2016, I focussed on the lungs and scleroderma on DAY 17
2018 Current Unmet Clinical Needs:
CALCINOSIS, Click here
GUM RECESSION, TOOTH
EXTRACTS, Click here
SOFT TISSUE, ULCERS,
Click here
TELANGIECTASIA,
Click here
SCLERODACTYL HANDS,
Click here
INVISIBLE
DISABILITY, Click here
RAYNAUD'S, Click here
GASTROINTESTINAL,
Click here
 |
| Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo. |
'Scleroderma
Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here
Global Patient
Profiles Campaign Index, Click here
Importance of Medical
Research and Awareness Raising, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
Week 3, 2017 Patient
Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient
Profiles: Progress in Medical Research, Click here
Week 1, 2017 Patient
Profiles: Introduction to multi complex disease, Click here
Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click here
2017 Global Patient
Profiles Campaign Introduction, Click here
'Being your own
awareness advocate', Click here
Scleroderma Awareness
Month Flashback 2017, Click here
Scleroderma Awareness
Month Flashback 2016, Click here
My 2016 Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click here
2016 Campaign Video, Click
here
March 2018 Autoimmune
Disease Awareness Month, Click here
World Scleroderma Day
2017, 29th June, Click here
World Scleroderma Day
2016, 29th June. Origins of the date, Click here
World Scleroderma Day
2015, 29th June.
 |
| James Carver, myself, Prof Chris Denton |
I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015.
I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view the presentation, Click here
To view my article 'Why Global Collaboration is Important', Click here
All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as:
Early Diagnosis
Expert Specialist Centres
Access to innovative medicines
ALL being, crucial factors for best practice management and care.
To read my articles:
Raynaud's, Click here
This year, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, 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.
1st 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. Read more, here
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
Living the dream, scleroderma style.
Please DONATE to help
fund medical research at The Scleroderma Unit, The Royal Free Hospital, London.
100% of your monies will be used for medical
research purposes only. No wages or admin costs. Thank You.
#HOPE
Last Update: June 2018
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