Alice Martins Correia, Switzerland,
June
Scleroderma Awareness Month 2017 Patient Profiles
Raynaud's, Autoimmune Rare Disease
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 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 2017 Patient Profiles campaign.
During Scleroderma
Awareness Month 2016, I focussed on the lungs and scleroderma on DAY 17
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
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, 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 Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
RARE DISEASE DAY:
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 Day Patient Voice
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
VIDEO
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
The Family Day at the Scleroderma Unit, The Royal
Free Hospital is taking place on the 19th 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.
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.
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease
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: April 2018