Thursday, 29 June 2017

Wyatt the Warrior, USA, June Scleroderma Awareness Month, Raynaud's, RareDisease, 2017 Patient Profiles, 29th JUNE, WORLD SCLERODERMA DAY



 WYATT THE WARRIOR, USA 

Wyatt The Warrior, USA
Wyatt the Warrior, USA, June Scleroderma Awareness Month 2017 Patient Profiles

29th JUNE, WORLD SCLERODERMA DAY 




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.  



Name:           Wyatt the Warrior, as told by his superhuman mom, Candace   


Location:       We live in Derby Kansas


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.   


Current 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 are currently fundraising for Angela Fernandez, an 8 year old systemic sclerosis princess who desperately needs funding for her and her Mom, Cuella Martha, to attend the forthcoming National Scleroderma Conference in Chandler Arizona.  

Please help Angela and her Mom go to the forthcoming Scleroderma Conference

To Donate, Please Click here  

For details of the Conference, Click here

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   

Please DONATE to help 8 year old, systemic sclerosis patient, Angela attend the forthcoming conference in Arizona, with her Mom.


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       

Week 1 Scleroderma Awareness Month, Raynaud's, Rare Disease, 2017 – Patient Profiles Campaign, Click  here

Week 2 Scleroderma Awareness Month, Raynaud's, Rare Disease, Patient Profiles 2017, Progress in medical research, Click here  

Week 3, Medical research areas of current interest, Scleroderma Awareness Month, Raynaud's, Rare Disease 2017, Patient Profiles Campaign, Click here   


DAY1 – DAY 24, INDEX Scleroderma Awareness Campaign Patient Profiles 2017, 
Click here      

DAY 25 – DAY 30, INDEX 2, Scleroderma Awareness Campaign Patient Profiles 2017, 
Click here

INDEX to Scleroderma Awareness 2016 Campaign, Click here   



To read my articles:  

Importance of an early diagnosis, Click here 

Taking Part in Clinical Research Trials, Click here

Expert Specialist Centres, Click here 

My Skin is Cured from Scleroderma, Click here 

UK Guidelines for Managing and Treating Scleroderma, Click here

June 2017 Total

Please donate to help fund medical research at The Scleroderma Unit where 100% of all of your monies will be used for medical research purposes only. Thank You.
DONATE     

Living the dream hoping for a cure

#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief 

Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates   


Thanks to USA patient Sharon Esposito for sharing her wonderful creativity

Thanks to USA patient Sharon Esposito for sharing her wonderful creativity


Journal of Scleroderma and Related Disorders (JSRD) – Abstracts Volume 1, Scleroderma Awareness Month, Raynaud’s, Rare Disease, 2017, Patient Profiles
Click here    



Please use the icons below to share this article #SclerodermaAwareness     

Wishing you a truly blessed 29th June World Scleroderma Day, Living the Dream, Feeling Good.

#SclerodermaFreeWorld - Imagine that 

30.11.16, Royal Free Hospital  'My skin is cured from Scleroderma' as by Prof Chris Denton, 19 years post diagnosis 

 
Autumn Day 2016 out and about on my electric scooter with the dream team, wearing my SclerodermaAwareness hoodie and 'eskimo' outfit ~ Living the dream, feeling good




   

 

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