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.
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.'
June 2017.
2018 UPDATE:
Current SYMPTOMS:
Raynaud’s, Joint Pain; Barret’s Esophagus; Reflux; Heartburn; Fatigue; Constipation;
Swelling Hands; Telagenctasias; Some facial changes.
MEDICATIONS:
Injectable Methotrexate;
Cortisone;
Vasodilator;
Colchicine;
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
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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