Jacob Vidal Davila, USA
June
Scleroderma Awareness Month 2018
Raynaud's,
Autoimmune Rare Disease
 |
| Jacob Vidal Davila, USA |
Name: Jacob Vidal Davila
Location: Houston, Texas
Diagnosis: Diffuse Scleroderma
Year of diagnosis: 1999
Age at diagnosis: 17
Where / who
diagnosed you?:
Houston, Texas/ Dr.
Maureen Mayes
What were your
presenting symptoms?
Severe selling and
joint pain in my hands and major joints, tight skin.
Extreme fatigue
How long did it take
for you to be diagnosed after first symptoms?
I was seen several
years before my family and doctor truly started to see drastic changes due to
the effects of the Scleroderma.
My hands had begun
to become stiff, my face and mouth were slowly becoming a bit tight also.
I was tested for
everything.
The doctors were quick
to list me as a lupus patient, because my mother is a lupus patient, but my
symptoms began to take a different toll on my body.
Current reality:
I am currently
starting a new regiment of immuno-suppressants to counter the affects of the
Scleroderma.
I have severe hand involvement,
my hands are closed tightly.
I have had several
small surgeries to help with infection due to ulcers and trying to open my
hands a bit for functionality.
My kidneys have less
function and have caused a build up of kidney stones.
I am also in the
beginning stages of Pulmonary Arterial Hypertension.
I have had open
heart surgery to replace two valves with artificial valves, due to the
fibrosis.
What are your 3
biggest current challenges due to your diagnosis?
My fine motor skills
sure, to loss of my hands mobility.
Disability, the
ulcers are definitely a horrible reality to deal with.
The constant pain is
a problem that will always persist.
What are your 3 top tips for living with your diagnosis?
Always stay positive!
Try to be yourself, not anyone else, and find your own normal!
Find friends and a support system for you and those in your life.
What are your 3 wishes for the future?
I wish I could help bring comfort and a cure to all those suffering from
this horrible disease.
I wish I could be doing what I always wanted as a child, being more
involved in criminal justice and psychology.
I wish I could be there more for everyone in my life.
I hate to fight but this disease will definitely make you a fighter.
Stand tall and don’t back down, you are your own best fighter.
SYMPTOMS:
Severe hand, heart, kidney, and skin
involvement.
Bone displacement. Ulcers and skin infections
due to immunosuppressants.
What Medications Do You Take?
Ibuprofen, Folic Acid, Pantoprazole, Prednisone, Hydroxychloroquine.
Vitamin D, Orencia
shots, Warfarin.
RESEARCH
2018
Have you taken part in a research trial?
Yes
How many trials? 1
Did you have to travel far? No
Would you advise others to take part in
research trials?
Yes, but be aware of the risks.
Treatment of any kind may help in cases.
In
Between Medical Appointments
Jacob is a Board Director at Scleroderma Foundation-Texas Bluebonnet
Chapter.
Huge thanks to Jacob for his wonderful scleroderma advocacy work.
Jacob is a very active
and very much valued member of our global community, spreading scleroderma
awareness.
Here he is, on April
17th 2018, at the Capitol Hill in DC asking for
support for Scleroderma research. Thank You Jacob!!
Big thanks go to Jacob for sharing his scleroderma Raynaud's experience, during Scleroderma Awareness Month.
2018 Unmet Clinical Needs:
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.
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:
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
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#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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