Saturday, 17 June 2017

Helena Gaspar, Portugal, June Scleroderma Awareness Month, Raynaud's, Rare Disease, 2017 Patient Profiles, DAY 17

June Scleroderma Awareness Month 2017 Patient Profiles  

Helena Isabel Moreira Gaspar

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.


Current 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 been 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
Corticoids
Vasodilators
Pantoprazol
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.   




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 more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here     

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, Click here       

Week 1 Scleroderma Awareness Month, Raynaud's, Rare Disease, 2017 – Patient Profiles Campaign, Click  here

Week 2 Scleroderma Awareness Month, Raynaud's, Rare Disease, Patient Profiles 2017, Progress in medical research, Click here

2017 INDEX Scleroderma Awareness Campaign Patient Profiles Click here      


INDEX to Scleroderma Awareness 2016 Campaign, Click here 


To read my articles:  

Importance of an early diagnosis, Click here 

Taking Part in Clinical Research Trials, Click here

Expert Specialist Centres, Click here 

My Skin is Cured from Scleroderma, Click here 

UK Guidelines for Managing and Treating Scleroderma, Click here


World Scleroderma Day 29th June Click here    


Please donate to help fund medical research at The Scleroderma Unit where 100% of all of your monies will be used for medical research purposes only. Thank You.

DONATE        

June 2017 Total
Living the dream hoping for a cure

#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief 

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Thanks to USA patient Sharon Esposito for sharing her wonderful creativity
Thanks to USA patient Sharon Esposito for sharing her wonderful creativity

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#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief

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