Raynauds Scleroderma Global Patients: Patti Pascucci, USA. AUTOIMMUNE DISEASE AWARENESS MONTH, 2018. Scleroderma, Raynaud’s, Autoimmune Rare Disease

Patti Pascucci, USA

AUTOIMMUNE DISEASE AWARENESS MONTH 2018

Scleroderma, Raynaud’s, Autoimmune Rare Disease

Name and Location:

Patti Pascucci, USA

Presenting symptoms:

Tight itchy skin

Hives with swelling, especially in my fingers and joints

Raynaud’s

Fatigue

What are your 3 biggest current challenges due to your diagnosis?

Today I no longer go to the gym as my hands are too curled.

My fingers have shortened too, losing bone to resorption.

I suffer from terrible GERD with gastropareseis.

I also have terrible bowel issues...constipation... slow to no movement.

I have some lung scarring but I have increased my breathing capacity with all the walking and yoga!

I have scarring and unevenness of my corneas which can only be helped by wearing 2 sets of contact lenses but I can no longer get them in my right eye as the eyelids are too tight.

My vision is okay most days with just relying on the one eye but without the lenses, I am legally blind.

What are your 3 wishes for the future?

I am truly Blessed and have a strong Faith in God.

I do not pray for my own cure... I've done this for 33 years now and I'm okay but I do pray for the too many others suffering with this horrible disease. And, I have met several people here with Scleroderma... in Hollis and Nashua... that's within a 7 mile radius! Unbelievable considering the rarity.

And we met by chance... not looking for them.

To read more about Patti’s Scleroderma, Raynaud’s, Autoimmune Rare Disease reality, Click here

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: