Thursday, 21 June 2018

Diwakar Rawat, India. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Diwakar Rawat, India.
Scleroderma Awareness Month 2018. 
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.


2017 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. 
June 2017. 


2018 UPDATE:


Current SYMPTOMS: 

Fingertip Resorption in both of my hands, but no Raynaud’s Phenomenon.

Resorption of Mandible.

Recent Symptoms 2018- Resorption of my Toes with severe pain.

Digestive and absorption issues.

This is a recent photograph of my toes.
 
You can see that my tips are resorping from the toes, leading in excruciating pain once again.



Current Medications:

I have stopped taking medications at all, since 2015.

I only consume a Probiotic capsule every day, for digestion.


RESEARCH 2018:

I have taken part in one research trial which was in India itself, so I didn’t have to travel far.

I advise everybody to take part in Research Trials, for the simple reason, that enough data can point out the similarities and differences and help in finding the cause and solution to the problem.

Additional Comments:

I feel there is a lot of grey area in Scleroderma and that symptoms vary so much from one person to another that it becomes hard to identify oneself with Scleroderma for sure.

I, for one have not been able to identify myself with this disease or any other person with symptoms similar to mine.

Although, I will add that every Scleroderma person has the same Heart, which is that of a warrior. 

Valley of Flowers, India

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 my articles: 
 
Current Unmet Clinical Needs 2018, Click here 
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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