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
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.
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.
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 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 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 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
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
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 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
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
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, 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:
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 Day Patient Voice
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
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
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
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#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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