Sunday 17 June 2018

Helena Gaspar, Portugal. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Helena Gaspar, Portugal.
Scleroderma Awareness Month 2018. 
Raynaud's, Autoimmune Rare Disease.
Helena Gaspar, Portugal

Name:           Helena Isabel Moreira Gaspar  

Location:       Lisbon, Portugal

Diagnosis:     Limited Systemic Sclerosis (CREST)

Year of diagnosis:    2008 

Age at diagnosis:     38   

Where / who diagnosed you? 
I was diagnosed by a Rheumatologist.

What were your presenting symptoms?

The strongest symptom I had, or at least the strangest one, was Raynaud's Phenomenon quite pronounced. I always had very cold hands, feet and nose. 

I realized later that there were other signs in my body that already indicated the presence of Scleroderma but, until that moment, I had no idea.  

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

I can not remember for sure but I think it took about 2 years. 

I passed several doctors, whom I complained about Raynaud’s, but it was not given any importance. I was even seen by an Internal Medicine Physician! 

Fortunately my Gynaecologist listened to me and asked for several blood tests, among them the ANA, whose result was positive. From there it was faster. 

I first went through a Haematologist and then went to a Rheumatologist who did some more blood tests. First I had the diagnosis of Lupus. 

I also did a capillaroscopy and more blood test that gave an anti centromere of 1/640. Finally, it was concluded that I had Limited Systemic Sclerosis.

2017 reality:

After all these years, I think I'm doing very well! 
I have two jobs that I can keep, one as a Programmer at an Insurance Company and another one as Spinning Instructor. 

I still can give 6 classes per week and I'm extremely happy for that. 

I live alone with my two, 16 year old, sons and, although, often with effort, I can be totally independent. 

The Raynaud’s remains, but very controlled with medication. 

Various telangiectasias in the face, mouth, chest and hands. 

I’m having some musculoskeletal limitations and many calcifications in several joints, especially in the hands. 

There are days the fatigue is extreme but, since I maintain a very active life in physical terms, I am forced to overcome it. 

In the last two years due to the reflux, I began to have more complicated problems in the esophagus. 

I was diagnosed with Barrett's Esophagus that may become something more serious, but for now it is being controlled. 

I developed thyroid nodules and another autoimmune skin disease called Grover's Disease, but things are under control too. 

There is also a severe constipation at the intestinal level and I had to removal some polyps (adenomas with low-grade dysplasia) three times. 

I really think that it does not have anything to do with Scleroderma, but it is more a factor of concern and imbalance for my body. 

I am very determined not to let the disease advance and I will do everything I can to prevent this from happening. 

The medication I am currently taking is: 

Injectable methotrexate.

D vitamin.
Folic acid.
Various medications to help improve esophageal motility and intestinal transit.   

Gluten and lactose free.

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

Keeping my lungs healthy will be one of the biggest challenges.  

Keeping me without ulcers and calcinoses and maintain hand mobility.
Control Barrett's esophagus.

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

Continue doing exercise, and for as long as possible. 

Continue giving Spinning classes to "help" my lungs to remain elastic, delay fibrosis and most of all, to improve my mental and physical stability.

When I’m on my bike I feel I can do everything! 

Maintain medical follow-up and strictly follow medication prescribed.

Keep smiling, thank and give value, every day, to the little things of life.

What are your 3 wishes for the future?

Be healthy to see my children grow up.

I hope the investigation continue and maybe one day we all can say: "I have Scleroderma, a disease with a cure!"
Join more and more patients in Portugal and work as much as possible so that Scleroderma is no longer unknown.

Please include anything which you think is important to share to provide a full understanding of this diagnostic reality:

'I believe that we have to do, as much as possible, an exhaustive awareness all over the world. 

It's not easy but we have to expose ourselves showing all of the symptoms and effects that scleroderma has and how it affects our lives. 

That's the only way for having hope that the research will continue. 

It's also very important that all around us, family, friends, colleagues, etc... have the conscience of what we are dealing with every day.'

June 2017.  

2018 UPDATE:

Raynaud’s, Joint Pain; Barret’s Esophagus; Reflux; Heartburn; Fatigue; Constipation; Swelling Hands; Telagenctasias; Some facial changes.


Injectable Methotrexate;
Pantoprazol and some other medicines to control the digestive tract;
Folic acid;
D Vitamin
Constipation medicines.

Huge thanks go to Helena for sharing her scleroderma reality and experience for Scleroderma Awareness Month, and, for all that she does for her fellow patients, throughout the year.  

To read my articles: 
Current Unmet Clinical Needs 2018, Click here 
CALCINOSIS, Click here  
RAYNAUD'S, 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.

Last Update: June 2018

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