Monday, 25 June 2018

Patti Pascucci, USA. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

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.   

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 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.  



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.  

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:
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   
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  
#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

No comments:

Post a comment