Wednesday, 28 June 2017

Patti Pascucci, USA. June Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 28




Patti Pascucci, USA

Patient Profiles DAY 28

June Scleroderma Awareness Month 2017 

Raynaud's, Autoimmune Rare Disease

Patti Pascucci, USA

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.   

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...


Current 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 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!   


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 – 30 years! WOW…. Living the dream, indeed.   

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

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, 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 29th June 2016, 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:
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  
  


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


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 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  


#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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