Sunday, 16 April 2017

Annual Check-Up / MOT of a Long Term Scleroderma, Raynaud’s, Autoimmune Rare Disease Patient - Nicola Whitehill

 
Annual Check-Up / MOT - Nicola Whitehill 
Long Term, Scleroderma, Raynaud’s 
Autoimmune Rare Disease Patient  




My diary is kept quite busy with medical appointments, which over the years, has steadied in frequency due to my symptoms being managed and controlled better. 

However, should I have a flare with my symptoms, then obviously more medical appointments will follow.

I am extremely grateful for my medical care team, headed up by the Scleroderma trail blazer, super human and world expert Prof Denton. 

Due to the complexity of scleroderma, the medical team required for optimum care is quite large with all of the differing medical care specialities involved. 

I went in to more detail about this on Day 30 Scleroderma Awareness month.



Day 3 focusses on the body parts which can be affected.



Day 5  provided information about the diagnostic tests carried out to confirm a scleroderma diagnosis and identify the level if any, of internal organ involvement.



I know that I am an extremely blessed and lucky diffuse scleroderma patient by way of me having minimal internal organ involvement. My skin, musculo-skeletal and gastro-intestinal system remain as my biggest challenges. 

I wrote more about my ‘tin-man’ symptoms, here

In 2004, I had an endoscopy to assess the damage caused by scleroderma, to my stomach and oesophagus, with the results not making for a pleasant image, as my stomach lining was bright red. 

I have also taken part in eating a barium radioactive meal to assess my stomach emptying, which showed a decrease in motility. I have not repeated these tests since. 

I mistakenly opted out of the sedation offered for the endoscopy, in the hope that I would be able to return to work the following day (I was able to work in my dream job, a barrister, back then). 

How optimistic and wrong I was! I had to take 4 days off work, which was of extreme inconvenience at the time, as my work diary had been booked for weeks’ in advance and taking days off from court at the last minute, caused all sorts of problems!

I wrote about how I control my gastro-intestinal issues, here and here
 
My scleroderma disease progress level is monitored by medical appointments at the Scleroderma Unit at The Royal Free Hospital in London, as well as, at my local hospital Southport and Ormskirk District General where I see the lovely Dr Sykes, Consultant Rheumatologist, and her awesome rheumatology team.

I wrote about the importance of expert scleroderma specialist centres, here


I wrote about the importance of an early diagnosis, here


In July 2016 I attended my local hospital for my annual lung and heart test.

My heart test included an ECG (Electrocardiogram) where the electricity or signalling of my heart was tested. Sticky pads were put on my chest and back, which were then wired up to a machine which investigates the electric signalling of the heart.

Obviously, all clothing from waist level up has to be removed for this procedure, which can bring about a Raynaud’s attack if the room is too cool or if there is a draught.

The removal of the sticky pads on my skin, is quite painful at the end of the procedure. I have a similar experience with plasters / elastobands, and will most often choose to not use them on my skin.

I wrote about my skin sensitivity Day 10



After the ECG, an ECHO procedure is carried out. 

This requires lying on your back leaning slightly on the left side. Again, this procedure requires no clothing from the waist up, which may induce a Raynuad’s attack. 

Echo machine

The attached image shows the equipment used to carry out this investigatory test for the heart. 

This is an ECHO machine which requires a trained technician to operate properly. Mark, was my technician last time, and to whom I am grateful for his patience, as the body position required to gain the best ECHO results, I find to be quite uncomfortable. 

A plastic microphone looking object is used to scan the left side of the chest. 

This is covered in petroleum jelly to allow the electric signal to be conveyed to the machine, which displays an image of your heart on the screen, and luckily my mine was beating satisfactorily with minimum fibrosis and scarring.

My next test was to investigate my lungs, which requires another specific apparatus designed for all aspects of the lungs including gaseous exchange and full lung capacity.

Lung Function Testing Equipment
Rachael was my technician for the day, and to whom, like Mark, I am grateful for her patience, whilst I took my time through the tests. 

I have been having my annual MOT at my local hospital for over a decade now. 

I am extremely grateful to Rachael, Mark and the rest of the team, for making these tests as easy, comfortable and patient focussed as possible.

This has helped make this annual scleroderma chore into a more social pleasant experience, as I enjoy seeing the staff and the chat! 

And, funnily enough, Rachel had seen me out and about on my electric scooter walking my brown dog Daisy, with my white dog, Mitzy sat on my knee, the week before!

I wrote about my mobility challenges a few months ago, Click here


The lung test takes about 20 minutes in total. At the end of which, I was delighted to see that my lung test results had improved slightly from last year. I did not ask for the exact result, as I was so overjoyed that an improvement was seen.

Over the years, I have learnt to not be dictated to by results, but by, how I am feeling, and, I want to feel good.

I certainly feel awesome knowing that my 2016 heart and lung tests have returned a satisfactory result - another year to get on and enjoy myself, with the tin man body being the focus to exterminate, for a return to wellbeing.

In my article ‘The Scleroderma Olympian’, I compare the time, effort, dedication and commitment to being the best athlete, with the desire to have a scleroderma-free body. The annual MOT tests are all part and parcel of this scleroderma Olympian’s preparation. Oh to be fit, healthy and strong again.

Living the dream – scleroderma style.



An edited version of this article was published here, in my Column with Scleroderma News.  
August 2016.


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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