Sunday, 3 June 2018

Haslina Wannor, Singapore. June Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease

 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. 


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.

The trials were organised by the Singapore General Hospital - Autoimmune & Rheumatology centre.  
 


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.  

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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