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.
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| 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.
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| 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.
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.
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.
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| Angela Scleroderma Conference |
#SclerodermaFreeWorld #RaynaudsFreeWorld
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| 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.
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.
Planning for the Future, Click here
Rare Disease Day 2019: Leaving a Legacy Gift, Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
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 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
2018 Scleroderma Awareness Raising and Medical Research, Click here
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.
#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.
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.
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
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:
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
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:
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
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
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| Sept 2017 |
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| Prof Chris Denton and I, Sept 2017 |
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| June 2019 |
 |
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
2015, 29th June.
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| 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.
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
 |
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
@SclerodermaRF
@RaynaudsRf
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
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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