Saturday, 23 June 2018

Lori Pierce, USA. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Lori Pierce, USA. 
Scleroderma Awareness Month 2018. 
Raynaud's, Autoimmune Rare Disease.

Lori Pierce, USA 



Name:           Lori Pierce  

Location:       Tampa, Florida, USA  

Diagnosis:     Scleroderma, Raynaud’s, ILD, Cardiomyopathy, Thyroid disease, Pulmonary Hypertension, GERD, gastroparesis, finger contractures.    


Year of Diagnosis:   2002    


Age at Diagnosis:    25    


Where / Who diagnosed you?     

Dr Fred Wigley, John Hopkins Scleroderma Center       


How long did it take for you to be diagnosed after your first symptoms?  

Immediately.  


2017 reality:   

Primary care doctor diagnosed Raynaud’s and did the blood work which presented with a positive ANA.

He then sent me immediately to Hopkins because he thought ‘maybe’ I had scleroderma… a disease he knew nothing about, and had only heard of.   


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

Hand contractures slow daily functions.    

Gastrointestinal issues make weight gain difficult to impossible.   

Fatigue limits endurance for any activity.    


What are your 3 top tips for living with your diagnosis?   

Keep a positive attitude and do not give up.   

Change your diet and eat ‘as close to the vine’, or as clean as possible.

This really alleviates a lot of symptoms – especially those that are inflammatory.   

Try yoga to help maintain range of motion, flexibility and to assist in slowing effects of fibrosis in the fascia. It CAN be done with adaptations and props.

I have created my own yoga practice that way.

It really CAN change your life and keep you moving.     


What are your 3 wishes for the future?   

To live as full a life as possible for as long as possible.   

To give back and to help others learn to make their lives as full and rich as possible, in the face of this condition.   

Keep building a strong Scleroderma community, full of support and positive lives. 
June 2017.   


2018 UPDATE:

As of this moment, my Scleroderma is stable with no new activity.

My only current ‘complaints’, are all as a result of damage done, in the past.

In the fall of 2017, I had an esophageal dilation done to alleviate some issues and have been doing well since.

I also had the three remaining fingers on my left hand partially amputated at the middle knuckle. They were completely curled into a fist.

The amputations have made life much easier and more manoeuvre-able.

No more knuckle sore or finger tip ulcers, either!



Current SYMPTOMS:

My mornings start with mild aches, pain, and stiffness. Evenings end the same way.

I am working through a frozen shoulder as best I can.

Osteoporosis is my new focus.

I'm working on diet and weight bearing exercise, in an effort to avoid taking medication.

I continue to be monitored by a cardiologist for an arrhythmia and heart failure issues as a result of previous scarring.

All are staying stable with medications.


Current MEDICATIONS:

Carvedilol, Enalapril, Nexium, Synthroid.

I also take a multivitamin and use CBD Hemp Oil.

The CBD oil has been a HUGE game changer in terms of my Raynaud’s and GI issues.

I was able to visit the mountains, which I love so much, for the first time in nearly 15 years IN THE WINTER!

My Raynauds isn't gone, but the cold tolerance is significantly improved! 

Montana


 
Natural Bridge


RESEARCH 2018:

In 2003-2004 I participated in a couple of trials. None recently.

I can't give advise on whether other patients should participate in clinical trials, because I believe it is a very personal decision, and each trial would need to be researched extensively before making an informed decision.

I personally believe that most of our health issues are related to diet and environmental factors and can mostly be remedied with diet and lifestyle changes.

Knowing what I know now, I would not choose to participate in any pharmaceutical trials for myself.


IN BETWEEN MEDICAL APPOINTMENTS:

I live as calm and stress-free life as possible.

I focus on self care for my health and well-being.

I care for the animals that I live with. 

Lori and Sequala
I am limited in a lot of things, but I still keep my body moving as much as possible through yoga, light weight exercises, pedalling equipment, and walking/light hiking.

I help to manage and present Yoga for Scleroderma where needed to help Scleroderma patients keep their bodies moving, too.

I also do some computer based work from home for a yoga studio here in Tampa.





Huge thanks go to Lori for sharing her scleroderma reality and experience in such detail, for Scleroderma Awareness Month, and, Huge Thanks to Lori, for all of her awareness efforts throughout the year.    

To follow Lori’s blog, 'ScleroScoop' Click here    

To follow Loris’ Facebook Page, Click here   

 
 
 
 
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

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