Wednesday, 21 June 2017

Diwakar Rawat, India. June Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 21


Diwakar Rawat, India

Patient Profiles DAY 21

June Scleroderma Awareness Month 2017 

Raynaud's, Autoimmune Rare Disease 


Name:           Diwakar Rawat   


Location:       Uttarakhand Himalayas, Mussoorie – India  


Diagnosis:     Diffuse Systemic Sclerosis, Scleroderma   


Year of diagnosis:    January 2012  


Age at diagnosis:     25  


Where / who diagnosed you?: 

Dr. Sharath, Indian Spinal Injuries Centre, New Delhi, India.


What were your presenting symptoms?:   

Bone resorption in finger tips


How long did it take for you to be diagnosed after first symptoms? 

My symptoms began in 2007 when my jaw and fingertips began to change shape. But due to various factors I decided against seeing a Doctor. 

By Autumn 2011, I could not do anything with my hands. I went to see an Orthopaedic Doctor who referred me to a Rheumatologist and I was diagnosed with diffuse systemic sclerosis within 3 months. 

My ANA and Cappillaroscopy were positive, however, I was negative for the Scl70 antibody.


Current reality: 


Problems with digestion and weight loss, but no lack of energy. 

Even though my skin hardened a bit, I have never had any Raynaud’s or Lung problems. I have no internal organ problems. 

I only struggle with bone loss in my fingertips and jaw. 

As a result, my looks have changed, I can not eat quickly, and I have pain when moving my hands. 

I struggle with weight loss, pain management in fingertips and digestion. I have been taking Rabiprazole and Itopride daily for 4 years after which, I reduced it to once a week. 

I now no longer take it, I take Ranitide instead. 

I also take probiotics and fibre for my gut. 

I was taking Methotexate, Amlodipine, Medrol for 6 months and Vitamin D, however, I have not taken any medicines for 2 years. 

I exercise regularly, even on the worst of days. I do running, Yoga, meditation. As well as, I keep stretching and moving throughout the day. 


What are your 3 biggest current challenges due to your diagnosis?  

Digestion   

Pain in fingertips   

Loss of confidence after facial changes


What are your 3 top tips for living with your diagnosis? 

Exercise   

Meditation   

Pursuing your hobbies


What are your 3 wishes for the future?  

Restore my natural health   

Travel the world   

Find the lost love / loves         



Huge thanks go to Diwakar for sharing his scleroderma reality and experience for scleroderma awareness month.    

Here is one of Diwakar's very inspiring poems:



To buy Diwakar's book of poetry, Click here

To read more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here    

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, Click here   

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, Click here    


INDEX to Scleroderma Awareness 2016 Campaign, Click here     


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   

Becoming a Patient Research Ambassador for the NIHR, 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    


Diet and nutrition, 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  
  


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

Links

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. No wages or admin costs. Thank You.
#HOPE 


 

Last Update: April 2018

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