Wyatt
the Warrior, USA
WORLD
SCLERODERMA DAY
29th
June
Patient
Profiles DAY 29
June
Scleroderma Awareness Month 2017
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.
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.
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.
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 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
INDEX to Scleroderma
Awareness 2016 Campaign, Click here
June 2017.
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 Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, 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:
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 Day Patient Voice
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
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
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
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#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
No comments:
Post a Comment