Patti
Pascucci, USA.
Scleroderma Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease.
Name: Patti Pascucci
Location: Nashua NH USA
Diagnosis: Scleroderma Fibromyalgia
Year of diagnosis: 1984
Age at diagnosis: 25
Where / who diagnosed you? What were your
presenting symptoms?
I diagnosed myself because the doctors here had
not seen a case.
I had my degree in clinical laboratory sciences
and worked as an ASCP certified Medical Technologist.
During the time, I researched the disease back
in my Clinical Immunology class.
I wanted to know more because my maternal grandmother had died from of it, age 46 - a year before I was born.
I wanted to know more because my maternal grandmother had died from of it, age 46 - a year before I was born.
She was in a Boston MA
hospital where, they at least, diagnosed her.
Of course, there were
no treatments available in 1957.
I gave birth to my
first child in June 1984.
Within 6 weeks I was
experiencing tight itchy skin... hives with swelling... especially in my
fingers.
I had realized - early
symptoms actually began, around 19 years old, with swelling fingers and
Raynaud’s - the turning blue and red.
I saw the Doctor, but
he thought I had some sort of punching blood vessel in my upper arms - maybe a
Binet protrusion blocking blood flow. No real answer.
I had more of the hives
and swelling, and body pain that I could not explain even though I was very
physically active with biking, running, working out.
As the symptoms
worsened after my daughter was born, I
told my doctor what it was.
He ran tests - One
barium swallow findings, slight abnormality in the distal portion.
My blood tests were not
definitive for anything.
Again.. no answers and
no help... just told me, that if it was scleroderma, I would not live long. So
I went home and had my ups and downs as the fingers got worse with swelling and
tightening all over.
I went 10 months before
a rheumatologist at the Lahey Clinic in Burlington MA took one look at me and
told me, yes I have it.
He said I was
right.
Then he told my husband
and I to go home, and live my life as best as I could. No treatments, no
cure... he read off a long list of what to expect along with early death... and
said goodbye.
Well my husband was
shocked and within 2 years of making my life even harder with his callous and
distant ways... he wanted out... said I was consumed by this disease.
At this point I had 2
children ages 3 and 1.
I had experienced worsening symptoms just a few months earlier with my skin swelling so tight and my elbows breaking open to the bones.
My arms were
experiencing awful contractures so mobility became hard.
I also experienced what
I learned was a bit of an emotional breakdown from depression but my husband
had discouraged me... forbid me from seeking any psychotherapy earlier on, when
I felt I needed it.
I had no one to talk to
about it all and my family lived 75 miles away.
I couldn't show my
weakness especially to my Mom as she would probably get too scared for me after
watching her own mother die from it.
My husband was actually
looking for me to die... or getting so bad he could divorce me and take the
kids... and he worked it so that he made my life even more miserable with his
cheating.
He was a very
controlling and manipulative man who worked out a plan to get out of the
marriage but make me so miserable that I would file for divorce.
I did, and spent
several years fighting for custody which the children did live with me. It was
so very hard doing it on my own.
And then I lost my job
as my fingers could no longer perform the laboratory tests. I then found a part
time job in advertising sales where I could make my own hours and work from
home if needed.
I spent many years with
having endured many bad open finger wounds, debreedments, participating in
studies at Boston Medical.. with no available treatments!
Many surgeries
including sympathectomies, and skin grafts.
But I raised my kids...
worked out every chance I could, in the gym and lots of long walking...
2017 reality:
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.
I live alone and my
kids - grown with their own lives, do not help me. I believe it's because they
always saw me as a capable and athletic mom.
I do take pain meds. The
pain would be horrible without it.
I always have at least
5 bandaged fingers at anytime.
Nerve jolts are
intense.
So, I take my meds and
just DO!
I just know if I
stopped moving and doing, I would cripple up with more
contractures.
What are your 3 top tips for living with your diagnosis?
Healthy... healthy
eating and living, though I Love My Gummie Candies.
I do yoga which has so
helped me with range of motion... especially Yin yoga which helps stretch the
tendons and ligaments with poses focused on using time and gravity.
And since I have my
son's Australian Shepherd - she keeps me walking which is so good. And
I have my little adopted Chocolate Sealpoint mix kitty.. DaisyLou Who. I LOVE
my furbabies.
I am a 'Nonna' to two
beautiful girls ages 3 and 1 and another grandbaby is due in
September.
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, 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.
Weird. Anyway, That's
me in a nutshell - I take my supplements and try to eat healthy.
Positive attitude helps
too!
June 2017.
June 2017.
2018 UPDATE:
Nothing
much has changed with my ongoing symptoms.
It’s
now been 34 years of living with this.
New
stuff keeps popping up, including GI issues and corneal scarring that leaves me
with very few options for correcting.
I’ve
always been terribly near sighted but this corneal problem requires wearing 2
contact lenses in each eye but I can no longer get them in my right eye.
The
tightness of my eyelids won’t allow it. On a good day I see pretty well but
without the lenses in my left eye, I am legally blind!
I
wonder if others are having this same problem?
I
only take Omeprazole for very bad acid reflux, pain meds and gabapentin for the
crazy nerve jolts and searing hot, throbbing, stabbing pain of ulceration some fingers,
and an ankle that won’t heal.
Antibiotics
are not working. I’m allergic to most of them.
RESEARCH 2018:
I
am not enrolled in any studies but you would think Boston MA, Boston University
Hospital would have more to offer.
It’s
been that way a long time for me. I did participate in a couple of trial meds
but neither produced the desired results... That was about 20 years ago!
So
I deal with this monster by myself with a great caring primary care Dr and a
good rheumatologist.
IN BETWEEN MEDICAL APPOINTMENTS:
I
continue to walk my dog, Chubbies. She’s an Aussie! Lots of energy!
And
I do yoga!
Thank
goodness for my yoga classes and friendships as this disease keeps me a bit
isolated.
I
take it day to day... I have my Aussie and my cat... 3 grandbabies now. Something
I never thought I would live to see.
I’m
still quite active for 59!
Keeping
the body moving is key, along with mind and spirit.
I’m
truly Blessed.
This
is an antique chair which I refinished in light grey mineral paint sealed with
a beeswax/hemp oil.
Repaired
the rush seating too. I gave it to my baby grandson for Christmas.
I knitted
this blanket for my daughter and her hubby for Christmas.
I
made smaller ones previously in pink and purple for my granddaughters.
Various
pics of what I do:
I
also garden... mostly containers but I’ve planted beautiful ground covers,
textured greens with colorful perennials in front of my town home. As well as,
in front of the neighbors on each side of me... so nothing stops me ... I won’t
let that happen!
Huge thanks go to Patti
for sharing her scleroderma reality and experience in such detail, for Scleroderma Awareness Month.
I am sure that you will agree with me, Patti shows us all how to live with this diagnosis – 34 years! WOW…. Living the dream, indeed.
To read my articles:
Current Unmet Clinical Needs 2018, Click here
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.
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:
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
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#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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