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. 

#RaynaudsFreeWorld #SclerodermaFreeWorld  

blog.raynaudsscleroderma.co.uk

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.  





  

Scleroderma Family Day 2020

25th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME


09.30 – 10.00           Registration and Coffee

10.00 – 10.20           Welcome                                                   Dame Carol Black
                                                                             Prof Chris Denton & David Abraham

10.20 – 10.40           What is a Biopsy?                                          Dr Kristina Clark

10.40 – 11.05           Dental aspects of Scleroderma                Prof Stephen Porter

11.05 – 11.25           Gastrointestinal problems –                       Dr Fiza Ahmed
shedding new light on old problems 

11.25 – 11.50           Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15           Scleroderma cohort studies –                  Dr Francesco del Galdo
                                 ‘Learning from our patients’

12.15 – 14.15           LUNCH BREAK – see below  

14.15 – 14.45           25 years of progress –                          Prof Chris Denton
from ‘black box’ to ‘positive trials’

14.45 – 15.15           International speaker –                            Dr Madelon Vonk
                                 Scleroderma Management in Netherlands

15.30                        Raffle


Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials                                                                  Rachel Ochiel and team
National Institute of Health Research                            Christine Menzies
Drug Information / monitoring                                        Pharmacy
Massage                                                                         Keith Hunt MBE
Pulmonary Hypertension Education / nursing            Sally Reddecliffe/Adele Dawson
Rheumatology Laboratory                                              Research Laboratory Staff
Scleroderma Education / Nursing                                  Louise Parker/ Joseph Cainap
Thermography                                                                Dr Kevin Howell
SRUK                                                                             Ollie Scott
Sjogren’s syndrome                                                       British Sjogren’s Society 


To Read My Articles:  

Gift in My Will, Click here 

Planning for the Future, Click here  

 


Rare Disease Day:   

Rare Disease Day 2020: 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  here   

 

Rare Disease Day 2019: Leaving a Legacy Gift, Click here     

Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here  

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2017 Rare Disease Day Flashback  
2016 Rare Disease Day Patient Voice  
2016 Rare Disease UK Parliamentary Reception     
  

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.


To read about medical research at the scleroderma unit, Click here   

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 overall. 

For optimum patient care, 3 hallmarks preside:




supported by a medicaldream team’ 
(expert specialist as the clinical lead).

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.   


To read my articles:  

Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, Click here
 
NIHR Video: 'My Experience of Clinical Trials', 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  

2018 Scleroderma Awareness Raising and Medical Research, Click here    


SCLERODERMA:

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- How to Diagnose, Click here        

'All you need to know', 2016 Awareness Video, Click here    

Global Patient Profiles 2018 Video, Click here    


Unmet Medical Needs, Click here     



Calcinosis Video, Click here    


The scleroderma tooth fairy, Click here     


Skin Cancer and scleroderma, Click here   

 

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019

This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Read more, here.    

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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.  

I am truly humbled and inspired by their work ethic and commitment to their patients.  

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 original diagnosing doctor, that I was looking at a 15month prognosis. 
 


  

Chat Magazine May 2019

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     

  

World Scleroderma Day 2018, 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, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

Raynaud's

October:  
Raynaud's, Click here  
 
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here    
To view Thermograph Video, Click here    

To view Thermograph image, Click here    

   
My Raynaud’s reality, Click here     


The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here   

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research 
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. 

 
  
Last Update: Feb 2020.    

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

#RaynaudsFreeWorld #SclerodermaFreeWorld  

 


   

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