Friday, 15 June 2018

Roy Louden, USA. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Roy Louden, USA.
Scleroderma Awareness Month 2018. 
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.


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.  

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

No comments:

Post a comment