Thursday, 30 June 2016

DAY 30: Healthcare Dream Team, Scleroderma Awareness Month 2016, Raynaud's, Autoimmune Rare Disease

 DAY 30: The HealthCare Dream Team
Scleroderma Awareness Month 2016, 
Raynaud's, Autoimmune Rare Disease


DAY 30:  Scleroderma Awareness Month 2016
The HealthCare Dream Team 
 

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. 



An edited version of this article was published here, in my Column with Scleroderma News. 
June 2016. 

To read my articles: 


Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, Click here      

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here



Key Event Dates 2018, Click here     

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       


Raynaud's, Click here    



World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   


Why Global Collaboration is important to the Rare Disease Patient, Click here      



RARE DISEASE DAY:
The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception 

2017 Rare Disease Day Flashback  

More unmet clinical needs  

Rare Disease Day 2016



Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –  
Medical Research provides the brightest light
for the illumination of the rare disease patients’ plight. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

VIDEO



Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

View video, here

Preamble - here 



The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

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.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

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. Thank You. 
#HOPE 


 

Last Update: April 2018





No comments:

Post a Comment