Sunday, 26 March 2017

WYATT The WARRIOR – Linear Scleroderma, Raynaud's in a young boy. Autoimmune, Rare Disease.



As told by Candace, Wyatt's super hero mom:
 
Wyatt is a 10 year old boy who was diagnosed with linear scleroderma at the age of 8.

A lot of people ask me, how did you find it?
I had noticed what looked like dirt on his ankle and accused him of not showering properly. I later took an alcohol prep pad to wipe it, and it didn't come off. The more I looked at the leg I noticed ‘the dirt’ travelled up his leg. It had already crossed 3 joints, the ankle, knee and hip, all on the right side. It was spreading to his chest and on to the right elbow as well.

After several trips to the doctors office and and firing one doctor, we had a positive RNA test. That rheumatologist knew right away, what it was. Wyatt was started on Methotrexate and was told he would take daily injections for 4-6 years.

Since his diagnosis he has had several other things come out of the wood work. He now has frequent migraines, and is a on a daily medication for them, plus takes Vit B2 to help. He has tried several other vitamins and meds but they have not worked very well. Wyatt has what the medics call ‘a cocktail’ - which is 3 meds he takes all together, as a rescue for when they get really bad.

Wyatt has had severe problems with his GI tract. He feels nauseated most of the time, which I can't even start to know how it feels, when you want to throw up all the time. It has to be miserable. He is on 2 daily medications to help with this, along with his appetite. Zofran is his best friend all the time, we never leave home without it.

Wyatt now has a tic disorder, they seemed to keep getting worse so we went to another neurologist , who prescribed daily tablets.

Wyatt also takes folic acid because the mouth sores get too bad without it.

Just in the last few months we had a positive RNP antibody test, this leans us towards a Mixed Connective Tissue disease. We have not identified which one yet, and I hope it does not strike until after he is in his adulthood. We did baseline tests on the heart, lungs and GI tract.

Wyatt has had a lot of ups and downs since his diagnosis. He misses a lot of school, and has to sit out of some sports now. But I will say he NEVER gives up!!! Wyatt always tries to battle through. He is stronger than I could ever be.



We were recently able to raise the funds to put up a billboard in our area. We have taken Wyatt the Warrior and made it a foundation to help other families out in need. We have donated lots of stuff from crafts, gripper socks, christmas gift to the local hospital and now we are collecting play doh for them. We have volunteered and feed the homeless, as well as, send funds to 4 other scleroderma patients and their families. We will be giving more out soon.’

Way to Go Candace and Wyatt! 

To keep up to date with Wyatt follow his Facebook page  


Here is some of his merchandise available for purchase: 

Bears $3.00 

Bracelets $2.00 


Lanyards $3.00 


Pens and pencils $1 


Stress ribbon (squeeze like a stress ball) $3 


Shirts $12 



Can pay by pay pal or mail.  


Shipping is any where from 1.00 and up depending on order  

.
Thank you for your support!


To read about what Wyatt was up to 12 months ago, March 2016, Click here
and 3 months ago, November 2016, Click here


Huge Thanks to Candace for all that she does for our global community #supermom. 

To read an update on Wyatt, Click here 



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 Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, 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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