Haslina Wannor,
Singapore.
June Scleroderma
Awareness Month 2018.
Raynaud's, Autoimmune
Rare Disease.
 |
| Haslina Wannor, Singapore |
Name: Haslina
Wannor
Location: Singapore
Diagnosis: Systemic Sclerosis with Interstitial Lung
Disease
Year of diagnosis: 2009
Age at diagnosis: 29
Where / who
diagnosed you?
Singapore General
Hospital, Dr Siew Li Cheing of the Autoimmune and Rheumatology Department
(ARC)
What were your
presenting symptoms?
Severe weight loss.
Heartburn.
Tight skin.
How long did it take
for you to be diagnosed after first symptoms?
I was attending a
follow up check up with a Gynaecologist and she noticed the difference of skin
colour and other symptoms on me.
She then referred me
to the ARC department.
I had several blood
tests, a swallow barium test, CT scan, ECHO, Lung Function Tests.
About two weeks
later, the ARC confirmed the diagnosis.
Current
reality:
I am now taken care
of by Dr. Andrea Low (Head of ARC Department) and Dr Tan Ju Le of the National
Heart Centre of Singapore, for my Pulmonary Arterial Hypertension.
Please describe your
current symptom involvement and management, including any treatments taking and
taken.
I have taken oral
chemotherapy, Cellcept, before I had my autologous transplant. It was quite a
success. I breathe so much better.
Since then, I have
developed Pulmonary Arterial Hypertension.
Currently, I have
reduced the Cellcept as my breathing started to be affected.
I take Tildalafil,
Macetentan, Esomeprazole, and Domperidon.
What are your 3
biggest current challenges due to your diagnosis?
Body aching /
Numbness in leg.
Breathlessness.
Dry cough.
What are your 3 top
tips for living with your diagnosis?
Wear socks / gloves
in cold weather.
Use gloves when
washing dishes.
Do stretches and
slow exercise when able to.
What are your 3
wishes for the future?
My wishes would be
for more people to be aware of this disease and come forward to help in
emotional support
I also hope that a
cure is found
I wish to be able to
see my daughter walking down the aisle.
2017.
The trials were organised by the Singapore General Hospital - Autoimmune
& Rheumatology centre.
2017.
2018 UPDATE:
Current SYMPTOMS:
Fatigue.
Inflammation.
Coughing.
Current Medications:
Esomeprazole.
Tadalafil.
Macetanten.
Salexipag.
RESEARCH 2018
Have you taken part in a research trial?
Yes.
How many trials?
Participated in about 5 research trials.
I took part in ‘nail folds’ research and some other too, which I can not
remember the names.
Did you have to travel far?
Yes.
Would you advise others to take part in research trials?
Yes, so that a cure can be found.
In Between Medical Appointments
As for in between
medical appointments, I get on with my daily life in managing my
business, building a community and organising activities for Muslim Moms.
I also take up
courses, to upgrade my sewing skills for lifelong learning.
Other than
that, I actively participate in being a patient advocate for
SCLEROWARRIORSG, and Pulmonary Arterial Hypertension Singapore with the
association, and National Heart Centre Singapore, separately.
BIG Thanks to
Haslina for sharing her scleroderma and Raynaud's experience for Scleroderma Awareness Month, and throughout the year.
2018 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.
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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