Monday, 16 October 2017

Lupus, Lambert Eaton Myasthenia and Secondary Raynaud’s, DEBBIE PENTLAND. Raynaud's Awareness Month, October 2017. Invisible Disabilities Week 15-21 October. Scleroderma, Autoimmune Rare Disease.

Lupus, Lambert Eaton Myasthenia and Secondary Raynaud’s, 
DEBBIE PENTLAND.

Raynaud's Awareness Month, October 2017.

Invisible Disabilities Week 15-21 October.

Scleroderma, Autoimmune Rare Disease.
 



Here is Debbie’s experience of living with, and managing her Raynaud’s symptoms, secondary to her Lupus and Lambert Eaton myasthenia diagnoses, whilst being a keen athlete and swimmer.

Debbie says,

‘My hands are affected mainly, but also my feet, and I do feel the cold all over, more than most.

I manage with good nutrition, layering up on clothes, gloves for every occasion and my favourite Mycoal handwarmers, which I couldn't live without.

I have to be prepared for each day. I check the weather forecast and plan plan plan.

For example- when doing triathlons, I activate 3 pairs of handwarmers before I go in to the water. One, I put in gloves, one in socks and one in the first top layer, which I will put on, for the bike section.

I first heard about me having Raynaud’s when I was about 25.

I was at the GP for something and it was summer time. I was in shorts and t shirt and the doctor looked at my hands and said 'ooh you have Raynaud’s'.

That was it until I was diagnosed at 32 with lupus and I was given the proper diagnosis of Raynaud’s too. This was when I learned more about it and how it was linked to autoimmune diseases.

I do not take any medication at all for any of my 3 auto immune diseases. I also have Lambert Eaton myasthenia.

I have tried a few medications for Raynaud’s but found that they gave me awful hot flushes and incredibly painful migraines, so I use a lot of ginger instead. Fresh, dried and also ginger tea.

I also juice up raw beetroot, ginger, apple and cucumber in my nutribullet which seems to help.

Interestingly, I have just completed a study with Portsmouth University sports science department into beetroot juice for Raynaud’s patients in helping circulation, and so I am looking forward to the results next year on that one.

A Raynaud’s episode can be quite debilitating.

My hands become very painful, cold and useless. I have no feeling one minute, and pain, the next.

It is impossible to do anything like opening your door with the keys, doing up buttons or zips, and holding anything, becomes impossible. 

Changing gears on my bike and pulling on brakes can be very difficult, hence, the hand warmers and 2 or 3 pairs of gloves.

I won't let it beat me though.

I do not hide it. In fact, all of my friends know about all my medical conditions and are all very helpful and caring towards me.

It's lovely when I've come out of a swim in the sea at our Triathlon club and someone hands me a hot mug of tea, another helps me get dressed, another puts my hat on, and someone always does my zip up on my Robie (big windproof waterproof snuggle robe for swimmers).

The thermal image below was taken after 2 minutes of immersing my left foot in tap water temperature, tank of water. I had to dip my right foot in cold water for 2 minutes.  

 

Check out the difference in my left foot to my right. Scary or what?!

The thermograph image below shows my hand after 2 minutes immersion.  



The scientists were amazed how quickly I re-warmed. I put it down to my healthy diet. 

This was me on a warm sunny day, right after a sea swim. 

I picked up warmed rocks from the beach as I walked up to our club beach hut. 

Someone made me tea and I always hug the teapot which makes a fabulous hot water bottle. Always a way. 


Although, my hands do look a tad black, post swim.' 

Big Thanks go to Debbie for sharing her Raynaud’s experience and managing tips for #RaynaudsAwarenessMonth. 

She is a huge inspiration to every Raynaud’s patent. 

And, further to this being DAY 2 of Invisible Disabilities Week, doesnt she look well ?! 😄

I have also ‘upped my game’ with my symptom management by having a strict diet. 

Read more, here  

#IDW17  



To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here    

To view Thermograph Video, Click here   

To view Thermograph image, Click here   
   
My Raynaud’s reality, Click here   

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here 

To read My ‘Invisible Disability’ experience, Click here


Please DONATE to help fund medical research into the cause and cure for Raynaud's, at the Raynaud's Unit, The Royal Free Hospital, UK.

All of your monies will be used for medical research purposes only, lead being, the world trail blazer Dr Kevin Howell.   

Dr Howell and I, Sept 2017



#RaynaudsFreeWorld #RaynaudsAwarenessMonth

Facebook Page: Raynauds Unit Royal Free Hospital
  
Twitter: @RaynaudsRf




Living the dream, hoping for a cure ....

 


Click here for Twibbon  

October 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   

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, 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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