Tuesday, 13 June 2017

Margie Kugler, Australia. June Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 13


Margie Kugler, Australia

Patient Profiles DAY 13

June Scleroderma Awareness Month 2017 

Raynaud's, Autoimmune Rare Disease 

Margie Kugler, Australia
 
Name:           Margie Kugler  

Location:       Perth, Western Australia  
  

Diagnosis:     CREST Syndrome  

Year of diagnosis:    2001  

Age at diagnosis:     39  
 

Where / who diagnosed you?   

Dr. Evellynne Wong, CandleWood, Western Australia Medical Centre 


What were your presenting symptoms? 

Weight loss. My stomach was in distress – I had bloating and diarrhoea, daily. 

My eyesight deteriorated over night. I needed glasses for distance and reading. 

Every step I made, hurt, and my feet were sore. 

Daily nose bleeds. 

Brain fog where I could not remember or concentrate for long, even minutes. 


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

I had given up smoking not long before the symptoms appeared. 

I went to see my Doctor to be told that my symptoms were in my mind and probably a result from giving up smoking. 

I decided to seek a second opinion. 

We had just moved to a new area and I contacted a new Doctor in the area.   


Quote from my book ‘The Gift Within’ … 

‘14th July 2001 …. A date I shall never forget, I sat in my Doctor’s office with intrigue and yet denial. The Doctor read the results of the blood tests to me. I was diagnosed with CREST syndrome – an autoimmune disorder. 

‘What is that?’, I asked, perplexed and frightened out of my wit. 

She explained as much as she knew, being unaware herself, of this rare condition. 

She seemed unsure and edgy but assured me that she would refer me to the best specialists to answer any of my questions.’ 

All that I can remember from that conversation was her saying that my immune system was unbalanced. 

The blood tests revealing specific antibodies. 

Anti-centrome antibodies were the marker to say I was positive for CREST syndrome.


Current reality:

Soon after I was diagnosed with systemic sclerosis, organ and skin involvement, with my stomach being the major symptom which I have had to deal with since 2001. 

I have gastroparesis and have recently undergone tests to see if I am eligible for a gastric electrical stimulator. 

The tests were with ‘Nuclear Medicine’. They included, a food dysmobility test where I had to eat radioactive scrambled eggs, a liquid nuclear medicine to drink, and a barium swallow test.


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

Depression and anxiety 

Gastroparesis  

Fatigue 


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

Feel as if you do have control. 

You are NOT having to be lead by the disease, instead be a manifestor of your own destiny, and evolve as a healthier, happier human being. 

Start each morning with a positive attitude. 

Plan a manageable day and include a ‘spoiling’ of yourself in a small or even large way.  

Search for help and support in all directions of your life. 

For example, a mentor / great friend to talk to, often.  

A supportive, expert medical team.


What are your 3 wishes for the future?  

I am well and I am managing  every day with faith and a happy attitude.  

There is a cure for scleroderma soon.  

If no cure, then I have conquered my challenges with depression, my stomach disease and my heart disease is stabalised. I am positive and have a healthy mind and spirit. With the physical body in its best condition given my many diagnoses.   



To read more about Margie, Click here    

Huge thanks go to Margie for sharing her scleroderma reality and experience for scleroderma awareness month.      



Margie has written a book of poetry as she journalled her thoughts and feelings. It was published in 2013. For more details and how to purchase, where Margie donates a percentage of each copy sold for scleroderma research, Click here  

To visit Margie’s website, Click here

Margie is also an angel card reader, having studied in the USA with Doreen Virtue. Margie’s readings are available, here


Margie has a Pintererst site with a lovely Poem which she wants to share for all Scleroderma Patients. Click here    

To read more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here    

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, Click here   

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, Click here    


INDEX to Scleroderma Awareness 2016 Campaign, Click here     


June 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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