Friday, 29 June 2018

Wyatt the Warrior, USA. WORLD SCLERODERMA DAY. 29th June. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Wyatt the Warrior, USA. 
WORLD SCLERODERMA DAY. 
29th June. 
Scleroderma Awareness Month 2018. 
Raynaud's, Autoimmune Rare Disease.
Wyatt The Warrior, USA


 
TODAY is World Scleroderma Day





Today’s patient profile focusses on a most brave and inspirational scleroderma patient:

Wyatt The Warrior - WYATT WRIGHT.

Wyatt’s attitude and how he manages his diagnosis is truly remarkable.
 
Wyatt's picture explaining Scleroderma
Wyatt with his twin brother Weston, and their friends, Living the dream



As is Candace, his mom, truly remarkable with her relentless efforts to ensure Wyatt has the best medical care, as well as, her tireless efforts with scleroderma awareness raising and fundraising. 

Candace - supermom


Name:           Wyatt the Warrior

as told by, his superhuman mom, Candace   


Location:       Derby, Kansas, USA.


Diagnosis:    

Limited Scleroderma, Raynaud’s
 
Mixed Connective Tissue Disease 


Year of diagnosis:    2014, 2017  


Age at diagnosis:     8  


Where / who diagnosed you?   

Dr Goodwin in Kansas City at children's mercy diagnosed him. 

Now our Dr is Dr Cooper in Kansas City at Children's Mercy.  


What were the presenting symptoms?  

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 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.  


2017 reality: 

Since his diagnosis, Wyatt 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. 

He is still on the same meds but we are having a hard time with his weekly shots, we have started weekly IV fluids to try and help this matter out.

We are getting a second opinion on the GI Issues.


What are your 3 biggest current challenges due to your diagnosis?  

Challenges consist of not being able to be a a normal kid all the time. 

He has several visit to hospital and missed out on baseball games.  

Skin tightness in his leg has slowed him down and caused his legs to hurt.


What are your 3 top tips for living with your diagnosis? 

Make sure you get second opinions when you are unsure of what your doctor’s treatment, or if they are unsure. 

Find a support group. 

Stay educated. 

 
What are your 3 wishes for the future?   

More funding for research, a cure, and that our scleroderma family have a good support system.  


Earlier this year, Candace and Wyatt organised a Scleroderma awareness Billboard, near to where they live. 

To read more about this, Click here 




To read about Wyatt taking part in Models for Miracles” in Wichita, Kansas, April 2nd 2016, Click here

Candace and Wyatt fundraised for Angela Fernandez, an 8 year old systemic sclerosis princess to attend the National Scleroderma Conference in Chandler Arizona, 2017.  
Angela Scleroderma Conference

To view Wyatt the Warrior Facebook Page, and fundraising items, Click here   




#SclerodermaFreeWorld #RaynaudsFreeWorld    


Wyatt with his Mom, and family



To read my article for World Scleroderma Day 2017, Click here   




Huge thanks go to Candace for sharing Wyatt’s scleroderma reality and experience in such detail, for Scleroderma Awareness Month. 
  
Infinite gratitude goes to Candace for all that she does throughout the year for raising awareness of scleroderma and helping other patients, especially other families sharing the same heartbreak of seeing their child go through this diagnostic reality. 
    
It is with pure intention that I made Wyatt the focus of today’s patient profile, 29th June World Scleroderma Day.   

I have a photo of Wyatt on my desk, and on my more challenging days, seeing him, and knowing a snippet of what he goes through, keeps me on track with my efforts to help with the dream of a SclerodermaFreeWorld, becoming a reality.  

It is my ultimate dream that the cause and cure to scleroderma will have been discovered before Wyatt’s 21st birthday, and even better, if this scientific mission is completed before then! #Belief #Hope 
June 2017.  



2018 UPDATE:


Wyatt has been diagnosed with Linear Scleroderma, a positive RNP with not a specific diagnosis, Asthma, Gastroparesis, Tourette syndrome,  & Migraines.

Current MEDICATIONS:

Methotrexate, Folic Acid, Vit B, Bus prone, Amitriptyline, Prilosec, Guanafacine, some of these are several times a day.


RESEARCH 2018:  

We have not taken part in a research trial.

I sure wish they had them for children


IN BETWEEN MEDICAL APPOINTMENTS:

We have started our Foundation and we are super proud to say that we get to send 2 families to the national Scleroderma Conference this year.

As well as, we have helped out several others, with medical needs with travel and medication.

Wyatt is now home schooled due to missing so much school these last few years.

Now, he works at his own pace, and rests, when it is needed.

He did above and beyond this year. He ended with 3 B's  and 2 A's. We are super proud of him.

He is playing baseball and racing this year as well.  



 
 
 
 
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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