Saturday, 2 June 2018

Jacob Vidal Davila, USA. June Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

  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.  



2018 UPDATE.

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.  

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:
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, 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  
#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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