Roy
Louden, USA.
Scleroderma Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease.
Raynaud's, Autoimmune Rare Disease.
 |
| Roy Louden, 4th July 2015 |
Name: Roy Louden
Location: Orlando, Florida USA
Diagnosis: Systemic scleroderma diffuse
Year of diagnosis: 2005
Age at diagnosis: 45
Where / who diagnosed you?
Primary care general practitioner.
What were your presenting symptoms?
Raynaud’s.
Thick discolored skin areas.
Muscle weakness.
How long did it take for you to be diagnosed
after first symptoms?
Diagnosis made from skin biopsy.
Follow up muscle biopsy and very high CPK
confirming muscle break down.
Current reality:
In remission since 2012.
Please describe your current symptom
involvement and management, including any treatments taking and taken.
Being in remission I am only dealing with the
damage done. Bad heart with 2 meds and pacemaker. Hands just adapting and
overcoming, stretching.
What are your 3 biggest current challenges due
to your diagnosis?
Hands have loosened but still cannot turn palms
up.
Have no strength to run or swim.
Digestion, while much better, will never be
right with 9 feet of small intestines gone from resection in 2011 removing
perforated small bowel – DO NOT ignore
constant bloating.
What are your 3 top tips for living with your
diagnosis?
Eating/drinking ONLY natural stuff.
Stay as active as possible.
Meditation / positivity.
What are your 3 wishes for the future?
A cure for all.
Stem cell muscle regeneration for me.
A move to the beach.
June 2017.
2018 UPDATE:
Current SYMPTOMS.
I have been in
remission for 6 years now.
I am not
experiencing any scleroderma symptoms now, but I am constantly dealing with the
damage done by it, and from when it was active.
Damage includes
disabled hands.
Arms will not
straighten.
While digestion
issues have diminished, there are still unpredictable bathroom visits from
having only 5 feet of small intestines left.
Heart permanently
needs 24/7 pacing and medication.
Muscles damaged from
scleroderma induced myositis will not regrow.
My muscles are so
weak, that I literally, can not go out on a windy day.
Current Medications.
For my heart, only,
metoprolol and lisinopril.
RESEARCH
2018:
Have you taken part in a research trial?
No.
Would you advise others to take part in research
trials?
Yes.
The only reason as to why I have not taken part is
because there have been none around me.
My Dr and I await breakthroughs that can repair my
damage.
Stopping a disease is only half the battle for
some.
Huge thanks go to Roy for sharing his scleroderma reality and experience for Scleroderma Awareness Month.
Huge thanks go to Roy for sharing his scleroderma reality and experience for Scleroderma Awareness Month.
To read more about Roy’s miracle healing
journey, Click here
To read about Roy’s diet, Click here
To watch Roy’s video of him on a Jet Ski, Click
here
To watch Roy’s parody of The Terminator movie,
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.
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:
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
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#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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