Friday, 1 June 2018

Alice Martins Correia, Switzerland, June Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease

Alice Martins Correia, Switzerland,
June Scleroderma Awareness Month 2018. 
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.  


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.

 
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.   


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 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.  

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:
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   
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  
#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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