
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

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


World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here

RARE DISEASE DAY:
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 Day Patient Voice


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
VIDEO

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


The Family Day at the Scleroderma Unit, The Royal
Free Hospital is taking place on the 19th 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.
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.
For latest updates follow:

Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease
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: April 2018
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