Thursday, 30 June 2016

DAY 30: Healthcare Dream Team, Scleroderma Awareness Month 2016

DAY 30: Healthcare Dream Team, Scleroderma Awareness Month 2016

DAY 30 The HealthCare DreamTeam


Scleroderma is a systemic disease that can affect the entire body — the treatment of which requires a multidisciplinary approach in medical care, best provided by an expert specialist centre.

As has been emphasized in most of my daily awareness posts, an early diagnosis is crucial for best patient care in the hope to prevent potential life threatening, irreversible damage.

In 1997, I was given a 15-month prognosis by my original diagnosing Doctor. The following year, in December 1998, I went for a second opinion to The Royal Free Hospital where I met and then subsequently, became Prof. Dame Black’s patient and then Prof. Christopher Denton’s patient.

A multidisciplinary medical team will be required to suit the individual patient’s need. I have included on the image (above), the medical professional roles that are involved in my ongoing care.

I am eternally grateful for the care and medical expertise of the super human beings who are Prof. Black and Prof. Denton, for keeping me alive with only minimal internal organ involvement. Although I am no longer able to work in my 60-hour a week role as a barrister and my lifestyle has been forced to change, I feel extremely blessed that I am able to combine my professional qualifications and skills with my 19-year patient experience to further the scleroderma and rare disease cause.

Living with a chronic, currently incurable disease brings along huge challenges, in addition to managing the physical symptoms. A clinical psychologist can be extremely helpful with addressing the life changes caused by scleroderma. 

For me, the next best thing to there not being a cure, is having the comfort in the knowledge, that I have the best medical care team around me, contributing to my return to wellbeing. 

My tonic to keep going is most definitely influenced by the dedication and commitment which I see Prof. Denton show to his patients and the scleroderma global community as a whole. 

Therefore, as a gesture of gratitude to Prof. Denton and the scleroderma unit at The Royal Free hospital, I started a Just Giving page, which I am delighted to report has so far raised £627.76 to go directly to Prof. Denton’s research fund. 

As I highlighted in yesterday’s post for World Scleroderma Day, never has been there a more exciting, promising time for scleroderma patients than now. The global medical community are working together with their research trials, and pharmaceutical companies are recognizing some of the unmet needs of the scleroderma patient, with more chemical compounds being granted orphan drug status than ever before. 

I very much hope that you have enjoyed this month’s Scleroderma Awareness Month posts. I would like to thank all of the global patients who commented and expressed their support in sharing awareness. United together, we will crack the scleroderma code. 


This article was originally published here  in my Column with Scleroderma News. 


To read my articles:
The importance of an early diagnosis click here 
the role of medical research click here
the importance of expert specialist centres click here
diet and nutrition click here
taking part in research trials click here
the UK guidelines for management and treatment of Scleroderma click here
my skin is cured from scleroderma click here 
BSR and BHPR guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs, Raynaud's, Scleroderma, Rare Disease click here  

EULAR guidelines for treatment of systemic sclerosis scleroderma, click here  


Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.
 
May 2017 Total
Living the dream, scleroderma style, hoping for a cure
 #SclerodermaFreeWorld #RaynaudsFreeWorld


29th June World Scleroderma Day. Read more here
Scleroderma Awareness flashback 2016. Read more here 
Scleroderma Awareness 2016 Campaign Index Click here 

Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates 

To view the Facebook page Scleroderma Awareness Month 2016 campaign images Click  here

To view Facebook page Photo Album ‘Wellbeing Side to living with Raynaud’s and Scleroderma’ Click  here 

Please use the icons below to share this article #SclerodermaAwareness 


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