My alter ego/work as chairperson Flemish Patient Foundation HereditaryConnective Tissue Diseases

When I was finally diagnosed with EDS and already disabled unable to return to the work force, I decided to give my life more meaning. I missed the social contact with colleagues and needed something to keep my mind active! In the EDS world, I had made many new friends, some real good and close friends, and most importantly I met my best friend, another soul mate Vicky. Discussing EDS and Marfan issues regularly with each other on the phone or via social media, I jokingly told some friends:

'One day, I will become the chairperson of the patient foundation, you see then my ideas and our ideas will become reality!'

Never in my mind would I have thought that things would change so rapidly, and that I would actually lead the foundation. It has been life changing and given me a feeling of purpose, no longer the wall flower at home. So it came about that I also, a few nights ago, gave my first lecture about Ehlers-Danlos.

An organisation with their main focus on charity had approached Vicky to ask if we gave lectures together with the geneticist from University Hospital Ghent, world renown specialist for connective tissue disease, about EDS. We weren't sure if Ghent could fit such lectures in their overly busy schedules, but to our pleasant surprise Prof. Dr. Fransiska Malfait somehow was able to make time. We are forever grateful to the good doc in helping us spread EDS awareness on her own spare time!

I had practiced that day my lecture at home with my grandson Seamus, 5 months old, as audience. Knowing that Seamus was satisfied and enthusiast about my performance, I left as prepared as could be early in the evening to pick up Vicky. I was not worried that much. Somehow I would wing it like I always do, adrenaline would carry me through the exhaustion. As EDS patient evenings are a struggle and I am not all in my element then. Of course, being especially dressed for the occasion including wearing make-up which I usually skip, Vicky and I gave each other a quick look over and approved each other. We were off to the next new adventure.

We were welcomed and received with grandeur at a posh restaurant. The lecture would be accompanied with a cocktail hour and dinner. A few minutes after our arrival dr. Malfait arrived and the evening kicked off. Between the main course and desserts dr. Malfait gave a very interesting lecture about EDs, the types and subtypes. The audience hung on her lips. As she was explaining the beighton score, Vicky volunteered so that the doc could show how the beighton score was assessed. Both Vicky and I have the highest score possible a 9/9! We both have EDS HT with an overlap with the classical type (HT is hypermobility type or type III). As the doc bend a pinkie backwards and brought a thumb to the wrist, you could hear aws and ahs from the audience. It was very funny as you saw many people trying to do the same! Dear reader just picture ladies between 30 and 75 years old trying to bring thumbs to the wrist or bending their fingers! It was hilarious. After the doc finished the audience exploded in loud applause.

Dessert was being served and a few people went to smoke a cigarette outside. I joint them with Vicky. I must admit that secretly I was very nervous as I did not know how my lecture would be received. After dessert, my turn had come. I was introduced quite elegantly. My adrenaline kicked in.

I gave a witness account of living with EDS as patient, mother and chairperson. I told about the long road to diagnosis, typical symptoms, and our way of life while using myself as example to explain it. I am not afraid to tell about the lesser aspects of EDS in my life but also about the positive aspects it has brought in my life. I told about that patients are often misunderstood as we do not look sick, etc. I tried to use humor and honestly and I was afraid on how it was received. The room was so quiet. Am I boring, is it not interesting went through my mind, but I pressed on. i also described a typical day in the life of an EDS patient. Just after I had explained that with the exhaustion comes not being able to think of the right words or memory loss, I got stuck and a man in the audience helped by reaching out through providing the right word. I thanked him and laughing said:

'You see that is typical EDS'

The audience laughed with me and at the end of the lecture, I read Vicky's poem about her feelings and EDS which I thought would be perfect to close the lecture with. Vicky was a bit surprised, but secretly glad that I had done so.

Oof, finished! It was done and over with. At that moment, I looked directly at the audience, it was so quiet, so still and then a very loud applause! People got up and approached me to talk to me. Apparently, my goal was accomplished and my lecture was a big success! Worries gone!

Not long after, the doc, Vicky and I left again to go home! It was already 11 PM.

Tomorrow another day as patient, and mostly to rest!


At this moment I would like to make a special thanks to Prof. dr. Malfait in being so kind to make time available and to thank the organisation for providing this opportunity to help us in spreading EDS awareness. Thank you from the bottom of my heart.