Wednesday, 13 June 2018

Margie Kugler, Australia. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease

Margie Kugler, Australia. 
Scleroderma Awareness Month 2018. 
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.


2017 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.  

June 2017


2018 UPDATE:

I have a black spot on my lungs and liver being investigated, I have a fibroid on my uterus, I have fatigue due to Hypothyroidism and Gastroparesis.

I have fibromyalgia in all my joints.

My teeth are sore and sensitive, I may need a root canal treatment.

My eyes have been diagnosed with mild cataracts and Epiretin over the Macula and Bletharitis.

My fingers and toes and sore and itchy due to the Raynaud’s and cramp up now its winter.

I have heart disease with one stent and a blockage in my major artery and dryness with Sgroggens syndrome.

I have achalasia and hiatus hernia and I am so overwhelmed, that the anxiety is always there.

The good news is that I am also recovering from an operation, a medical Implant for my Gastroparesis.

It is a ‘The Medtronic Enterra, Gastric Electrical Stimulator’ implanted two months ago. I am happy to say, I am having a terrific response, considering I have fibrosis from the Scleroderma throughout my digestive system.

I want to share my remarkable lack of previous symptoms listed below.


Current SYMPTOMS:

Dizziness, fever, aching all over stiff, super fatigued, sore fingers and toes.

Dry and blurry eyes and mouth, shortness of breath, cant swallow or digest meals properley.

Brain Fog, loss of memory, depression, sleeplessness, hearing problems, neck and shoulder problems, tightness in all joints, especially in the morning.

Small energy window of being active in morning.

More good news...NO:

Bloating, nausea, vomitting, abnormal stools, less constipation and diarrhoea, fluid retention, excess hunger or cutting pain in abdomen and chest - all GONE or better, due to my new Gastric Implant.


Current MEDICATIONS:

Nexium, Thyroxine, Allegra, Climara. Ralovera, Metex, Metformin, Lipostat, Aspirin, Vit D And Calcium and Vit b12.

Good news again.....I have come off these Medications:

Domperidone (Motilium)
Only take 1 x Senna tablet at night noe and stopped ENDEP for sleep.


IN BETWEEN MEDICAL APPOINTMENTS:

I write poetry, I read Angel Cards and Crystal Cards, I love walking and listening to music, I dabble in drawing, I love reading all sorts of metiphysical studies and courses.

I network my book THE GIFT WITHIN on my computer.


RESEARCH 2018:

The Gastric implant was not a clinical trial to my knowledge, but was an important ‘First’ for a Scleroderma patient here, in Perth, Western Australia.

I am blessed that the hospital is only 15 minutes away by car.

Would you advise others to take part in this?

Yes, definitely, I am now a Gastroparesis Advocate with an online Petition going to help others with Gastroparesis, through our Medbank Insurance.

It is at CHANGE.ORG

I was fortunate to have my device supplied by medicare and so, therefore, I want to share my blessings with others, by starting this petition.

I love to help others like me, in any way, but mostly by writing positive words of affirmation in all my writing.

Love and light

Margie Kugler  


To read more about Margie, Click here    


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

And, HUGE thanks to Margie for being a leading pioneer for our scleroderma global community with her recent gastric implant. Wishing you much more continued success, with your return to wellbeing Margie!

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    






Current Unmet Clinical Needs 2018: 

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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