Thursday, 1 June 2017

Jacob Vidal Davila, USA, June Scleroderma (Raynaud's) Awareness Month 2017 Patient Profiles DAY 2

Jacob Vidal Davila, USA

Jacob Vidal Davila, USA, June Scleroderma Awareness Month 2017 Patient Profiles
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 swelling and joint pain in hand and major joints, right 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 become 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 has caused a build up of kidney stones.

I am also in the beginning stages of Pulmonary artery 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.

Jacob is a Board Director at Scleroderma Foundation-Texas Bluebonnet Chapter.  

Big thanks go to Jacob for sharing his scleroderma Raynaud's experience, during Scleroderma Awareness Month.


To read more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here     

2017 INDEX Scleroderma Awareness Campaign Patient Profiles Click  here   

INDEX to Scleroderma Awareness 2016 Campaign, Click here 

To read my articles  

Importance of an early diagnosis, Click here 

Taking Part in Clinical Research Trials, Click here

Expert Specialist Centres, Click here 

My Skin is Cured from Scleroderma, Click here 

UK Guidelines for Managing and Treating Scleroderma, Click here

World Scleroderma Day 29th June Click here  

June 2017 total
Please donate to help fund medical research at The Scleroderma Unit where 100% of all of your monies will be used for medical research purposes only. Thank You.

DONATE     

Living the dream hoping for a cure

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#RareDisease #Hope #Belief 

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