Raynauds Scleroderma Global Patients: Jacob Vidal Davila, USA, June Scleroderma Awareness Month 2017 Patient Profiles DAY 2, Raynaud's, Autoimmune Rare Disease

Jacob Vidal Davila, USA

Jacob Vidal Davila, USA

June Scleroderma Awareness Month 2017

Patient Profiles DAY 2

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 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

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

Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here

Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here

The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here

Key Event Dates 2018, Click here

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

World Scleroderma Day 29^th June 2016, Click here

World Scleroderma Day 29^th June 2017, Click here

Why Global Collaboration is important to the Rare Disease Patient, Click here

RARE DISEASE DAY:

The theme to this years Rare Disease Day is Research

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 UK Parliamentary Reception

2017 Rare Disease Day Flashback

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

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

INDEX

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

Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here

Preamble - here

The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19^th 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.

1^st 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: