Friday, 23 March 2018

Kelli Schrag, USA. AUTOIMMUNE DISEASE AWARENESS MONTH, 2018. Scleroderma, Raynaud’s, Autoimmune Rare Disease

Kelli Schrag, USA
AUTOIMMUNE DISEASE AWARENESS MONTH 2018
Scleroderma, Raynaud’s, Autoimmune Rare Disease


Name and Location: 
Kelli Schrag, USA 

Presenting symptoms:

When I was a child I had broken arms and in my 20’s I had issues with my bones fracturing in my feet, rolling of my ankles when walking, and the ball of my foot hurting when I walked. 

In 2004, had bone loss in my lower mandible due to an aneurismal bone cyst.  


I remember during college breaks from 1999-2004 in the winter, I worked in maintenance and my hands would turn purple and often go numb. No one ever seemed too concerned about it, but my hands would take a long time to warm back up.  


I continued working outside after college until 2010, when I chose to stay at home with my two children. I remember when working in the flowerbeds and pulling weeds, my hands would get stiff and I had some indentations in one of my fingers from writing.   


After giving birth to my son in 2008, I had a pinched sciatica nerve and I began having issues with Carpal Tunnel. In the winter of 2011, my hands started turning white with no reason or temperature change.   


In 2012, after running in a 5K race, my sciatica nerve was pinched again. My fingers continued to turn red, white, and blue into the summer months, where they also started going numb. My hands started to swell and were mottled, with red and yellow, and red surrounding my cuticles. I had 4 miscarriages from 2007-2012 with 2 healthy pregnancies during that time.


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

Gastrointestinal problems causing a compromised immune system due to leaky gut and figuring out what is best to rebuild my immune system to heal and staying away from foods that cause allergies  


Raynaud’s Phenomenon with red, white, and blue fingers with cold, pain, and stress along with swelling in my fingers and hands causing my hands to be tight and mottled in color with dry cracked cuticles and red dots along my cuticle lines   


Bone loss due to dental problems





What are your 3 wishes for the future?

Doctors, Specialists, & Dentists that know how to care for their patients by looking at the patient as ‘a whole’, and seeking out the root cause and finding ways to care for them, instead of just giving medicine to put a band aid on the symptom to avoid car-ing for the individual patient.   


There would be a cure using food as medicine and a known cause of why the dis-ease affects those with the disease   


Health Insurance would cover what is needed to benefit those of us dealing with the disease as that causes unneeded stress and makes symptoms worse 

To read more about Kelli’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   


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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