Addisons Group Meeting

Sharing my Addisons story with medical students

In April 2017, I was invited by Endocrinologist Prof Richard Ross to share my Addisons Disease story with the 2nd year medical students at the Medical School at the University of Sheffield. Prof Ross was presenting his Endocrinology lecture on Circadian Rhythms and Adrenal Insufficiency. I first met Prof Ross in October 2015, when I was newly diagnosed with AD and was still very ill. Prof Ross really helped me by tailoring treatment to maximise my recovery.

I have to admit, I was a bit anxious about speaking to the huge group of medical students gathered in the lecture theatre. However talking to Prof Ross beforehand and preparing together with him what to say was helpful. Before delivering his lecture, Prof Ross told students how very important it was to listen to patients before introducing me and asking me when I became unwell and how was my journey of diagnosis and search for treatment. I shared my story of being misdiagnosed in 2015 by several health professionals while being very ill and near death. I told students how my Mum, a retired GP in Czech Republic, recognized the symptoms of Addisons when I arrived to visit her in a very poorly state after a long journey. My Mum took me to Czech hospital and, after tests, I was diagnosed with Addison’s Disease and began the treatment. Prof Ross asked some more details to clarify the progress of my treatment and I had also opportunity to introduce students to the Addison’s Disease Self Help Group (ADSHG) and explain how very much support I have been receiving from the group.

Prof Ross invited me to stay for the whole lecture and I found it really fascinating listening to the talk. I was really moved when I heard how Prof Ross kept coming back to my story through his lecture and used examples of mistakes or omissions made by healthcare professionals to emphasise to students what really mattered and not to miss any critical signs and symptoms of Addison’s. I felt very encouraged and empowered hearing Prof Ross emphasising the importance of listening to patients and carefully assessing all the symptoms with awareness and understanding of Addison’s Disease. Prof Ross also mentioned about the important role of ADSHG and the importance of working together with patients

Prof Ross told me that, through hearing my story, students will remember better the importance of the right diagnosis and the importance of not missing symptoms of Addison’s in whatever medical role or context they would work. A few students came briefly talk to me after the lecture and I handed out ADSHG flyers.

I really enjoyed talking to students and hearing Prof Ross’s lecture. I would be happy to come back again next year to talk to the next intake of medical students as I am passionate about increasing awareness of Addison’s Disease.

Addisons Group meeting December 2016

On Saturday 3rd December 2016 we had our second meeting at Sheffield. We met at local Cafe and talked about our Addison's stories, about Medical ID and many other Addison's topics. Nice to get to know each other little bit more. We decided that next meeting could be in cafe again, probably in March 2017 and after that following meeting could be at the hospital, either with Endocrinology nurse or with Endocrinology Consltant who offered us to help if we needed any help.

Addison's Support Group

Last week we have had our first Sheffield meeting of our Addison's Support Group. 

It was lovely to meet for the first time in person few other people who have Addison's and share our life/diagosis stories. 

And Endocrine nurse Vicky was excellent teacher, teaching us all how to use emergency Hydrocortisone injection. 

We have planned our next meeting for December 2016.

New paintings - my Addison's journey

Being thankful for being here and now

A year ago I was very ill, getting more and more ill each day without knowing what was wrong with me... I lost lots of weight, I was extremely weak and I had all the symptoms of Addison's Disease. 

However, neither my GPs or hospital doctors noticed that all of my symptoms indicated Addison's Disease and instead suggested my problems were caused by my Hashimoto's Hypothyroidism and kept increasing my thyroid medication.

I am so thankful to be so much better now, a year later, thanks to my Mum, retired GP who saved my life by recognizing Addison's Disease symptoms and taking me to the hospital at Czech Republic where I received the right diagnosis and treatment.

Here is my Addison's story and paintings at
Story of creativity and Addison's Disease 

I was just looking at some photos from the last summer and lots of memories came back to me...

Here is a photo with my lovely younger brother Tomas at Prague Airport in August 2015, 
the week after I started medication for Addison's Disease. 
I was still very ill and weak then,walking with walking stick, but glad to be alive.  

And I am adding photo with my brother from May 2016 when I visited my family on 2nd anniversary of sudden death of my Dad. 



Year 2014, when my Dad died, was year of many challenges.
 It was probably during 2014 when my Addison's Disease began quietly develop without me, or anyone else noticing. 
Looking back, I can see that I had many symptoms of Addison's Disease already, but thought it was just my Hashimoto's Hypothyroidism making my life difficult and I kept asking GP to refer me to Endocrinology.

And here is a photo with my husband and daughter in August 2015 at Prague airport when I was still very ill, but already getting treatment at Czech Republic during our holidays. 

I was for the first time travelling in the wheelchair through the airports as I was too weak to walk. It was really eye opening experience for me... 

A year later, July 216, I am still learning many new things on my Addisonian journey, especially new and challenging learning about how to cope with hot weather. 

I very much appreciate support and advice from online Addison's support groups.

And I plan to start support group for Addison's Disease patients in my UK home town, 

with the help of excellent Endocrinogy nurse Vicky.

I am happy to be alive, enjoy each new day, even when facing struggles and challenges. 

It is a challenge to face situations where my Addison's Disease becomes a barrier and my other invisible disabilities make me feel more disabled, but I try to be positive and hopeful.

Painting and creativity helps me on this journey. 

And my lovely family helps me very much too. Here, our wonderful daughter is making rabbit ears for me, to help me not to feel too serious about the life :)

My recent creative activities