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.

(3/3) Me, myself, Stockholm, a crutch and a wheelchair

This is a continuation of my sole trip to Stockholm part 1 and part 2 

SIGHT SEEING

All the other delegates and friends had left the hotel and my flight was not leaving till 8PM. I was able to stay at the hotel till 6 PM, but I would be foolish not to experience Stockholm. I decided to go sight seeing.

A few kilometers from the hotel was the old part of town and I had read that there was a Christmas market. I decided to venture my way through snow and ice. Bundled up in layers of clothes, I wheeled myself out of the hotel. According to the reception staff, normally it would be about a 15-20 minute walk. The first part I travelled through the train station, so I could roll my wheelchair easily. Just before leaving the station, I took a small rest to recuperate. As I was waiting, still inside the building, a train station employee approached me to ask if I needed special assistant. Amazed I told her no, but thanked her. Turned out that at the exact spot where I was resting was a sign for waiting point for special assistance. Oops, I did not notice the sign previously, but was impressed with Stockholm's service to persons with a handicap.  Once I left the train station I had to deal again with lots of snow and icy roads. It was becoming very difficult to handle the snow and ice with a wheelchair so I decided to use my wheelchair as a walker for the rest of the way. After negotiating a few streets I continued my trip through the main shopping street which was sort of cleared of the falling snow.  Every 10 minutes of walking I took a rest as I cannot walk long distances. It was literally walking at snail pace, resting and slowly shuffling on and resting. It was so icy that I saw many people fall to the ground. A walk that was suppose to have taken 20 minutes had taken me more than hour but I finally saw the old city nearing. It was very pretty, the old buildings and the castle. Proud of my accomplishments, I pushed on.  I walked through the old town soaking up the sites and visited the Christmas market, still resting every 10 minutes or so. At the market, I grabbed something to eat and went back to the hotel to rest before going home. My site seeing trip that should have been a hour or so had taken 5 hours. At the end you can see some more pictures.

GOING HOME

Around 5PM I checked out of the hotel and went to the bus station to take the bus back to the airport. This time the driver was very helpful and helped me get my wheelchair in the luggage bay and at the airport he helped as well. It had been snowing all day, and I was worried that the airplane would have a delay. No worries, even though Bromma Airport is an old school airport where you still have to walk outside many feet to the airplane, the airport is very efficient and adept to the weather conditions. After checking in, I bought some things at Duty Free and waited in the terminal till it was time to board passing time surfing and face-booking.

I was sitting very close to the lady at the boarding gate. Close to boarding time her walkie-talkie went off and I heard her cursing into it. She did not realize that I could understand her and she was really really very angry. The conversation went something like this:

'Those stupid pilots, they are so stubborn. If they are told to park the plane at a certain spot they should not decide on their own that another spot better is for take-off. Stupid Belgian! Tell him to re park the plane at the designated spot because we have a special assistance case and at the spot where he parked we can not get the passenger on the plane!'

As she ended the conversation, the light for boarding went on and passengers started to impatiently cue to be able to get to the plane. The doors remained shut! As the crowd become more and more agitated that they had to wait, looking at their watches, wondering why the doors where not opening, the few passengers that had heard the conversation as well started to spread the story. Oh no, now I was getting angry and agitated looks from my dear fellow passengers as well. Finally 15 minutes later, the door opened but the lady stopped everyone from passing as she told them that a special assistance person needed to board first. Again angry looks coming my way. A nice young terminal employee approached me and together we went through the doors which he shut again after us. People seemed to forget that special assistance persons board first, but we are also the last ones to leave the plane at arrival destination.  The young man wheeled me through the dark, cold and snow to the plane where a special lifting container was waiting to hoist me aboard. Some ten minutes later after the container had been replaced with rickety metal staircase, the other passengers started to board the plane. Some passengers where still angry with me even though the plane departed right on schedule! I was lucky I had two seat for myself and the rest of the flight was quite uneventful.

Around 11PM our plane touched ground and after a long rolling ride to the baggage pickup, I was relieved to find that my bag was first to come through. Most passengers had take-on luggage, but with a wheelchair was it impossible for me. I found a clever way to attach my trolley to my wheelchair and like a little train I entered the arrival hall to see the happy face of my husband!

Around 1 AM, I finally was home and rolled into bed, exhausted from my trip but very proud of my accomplishments. My sole trip to Stockholm as a disabled person was over and I had enjoyed every minute of it. No weather, no wheelchair, no disability stopped me in turning this trip into reality!

borrowed picture taken during day to show airport

borrowed picture taken during day to show airport

Humour makes the Zebra Safari (EDS world) go round!

The last few days were heavy days resulting in a bad night of sleep (read not much sleep!!!), waking up quite groggy this morning! A true BITCH from hell. At least that is how I felt and I must have looked like one as well. Sadly, with a big smile, I have no picture to support the facts.

Luckily, my husband, woke up quite refreshed and good humoured! He helped me look at things and see the funny side of living in a zebra safari.

As I passed him I gave a quick hug and moved on not noticing that he veered backward to lean against me. 'He,' he said, 'I'm not as hyper-mobile as you!' I just helped him catch his balance on time or he would have been horizontal on the floor. That started the banter between us. Before I knew it we were in a stitch about EDS. OK, I realise that the situation may not be funny to you reader, but just imagine the scene in your head like you are watching a comedy on TV and I am sure a smile will appear on your face.

My husband is following a diet to lose a few pounds and I commented that he has no more love handles as I helped prevent a fall. My body, on the other hand, with EDS-HT with an overlap with the Classical, has many bumps and ridges. I'll admit it to you fellow reader, in plain facts, a gross amount of surplus belly skin leftovers from three pregnancies that never came quite right because of EDS. Not a pretty picture, I must add. I commented to my husband that he was nice and tight nothing like my flaps. Bless him as he told me that he loved my little mountains and that they were like rubber he could play with. Little mountains on which he could practice skiing and every day he could change the slope and follow another path. At first glance, my faithful reader, you may think that he meant this as an insult, but if you would have seen his eyes and the loving way he looked at me, you would definitely think otherwise. Dear reader just keep picturing the scene in your head and you will see the grotesque humour of it all. He grapped my tummy and slid the skin from side to side. Just at that moment I lossed my balance and my right leg went sideways with a dislocating knee in the most impossible stand that only an EDS-er can accomplish. Just picture the scene, I losing balance, arms wildly trying to catch my balance, my right hip and leg in a position and my knee bend in the strangest position, like the body of a jumper on the ground but then in mid-air.

Here the giggles came and we lay in a stitch. It was just too funny and too surrealistic like a slapstick. I said yes, I even can change the ski-jump in mid-air. We had tears in our eyes from laughing.

I can think of many such situations. Think about a group of Zebras eating together in a restaurant, all messing up with their food flying through the air while they all have their pinkies in the air like holding a cup of tea. Or the many times, a zebra just falls to the ground tripping over air. Or a zebra that hurts their toe because of an orange. I think any zebra could tell of many funny moments.

  

Or the fact that you strike a pose, like this picture from this morning and your husband says and places on Facebook:

'Ok, ze zit in een jaren twintig mood :-) dat ze maar niet de charleston gaat doen want dan gaat ieder lichaamsdeel een andere kant uit :-D' 

'Okay, she is fased into the twenties :-) She better not do the Charleston because then every body part will go in another direction :D'





You see dear reader, there is a humerous side of EDS, it is just on how you look at the situation. You yourself can choose to laugh or cry. I choose to laugh as it makes my Zebra life much better to cope with and it makes my Zebra Safari go round!

We are "Super women"......NOT!

Last month, I only published one item. There just wasn't time enough in a day to write or I simply did not have the energy to write more. Time has come to write a new article.

VICKY

CHARISSA

My best friend Vicky and I, were always convinced that we belonged to the "fitter" or "better" Ehlers-Danlos patients. We thought that our bodies were able to cope better and do much more than reality has learned us. That we both are worse off has been made clear to us, but more about that later!

The month January was a hectic month for both of us, in our free time as well as in our patient foundation time. The foundation has been inspirational to us, it has given us the feeling that we are can still mean something in this world. We give ourselves with full devotion and are gratefull to have the opportunity to mean something to others and ourselves. We are convinced that things are going in the right direction with the foundation and that together with the whole foundation's team we will start realising our goals.

Last month Vicky and I went to a seminar about eHealth hosted by the EPF (European Patients Forum).

EHealth, in today's technology, is becoming a standard, even if there is still a lot of work to perfect it. It has become apparent that patients will need to play more and more an active role in eHealth. Every patients has the right to know what is written in their medical reports, even the minute details. Even today, this right is not always exercised properly en should a patient get their hands on a report, it will dazzle the patient with all the medical mumble jumble.

The seminar was also more than just eHealth, "Patient Empowerment" is just another example of important topics that was discussed.

Patient Empowerment is a broad concept. Experience through workshops and discussions has taught us that in general the priority is mainly place on our rights. We have the right to read and look into our files, the right for the correct information, the right over our own bodies. We are not saying that it is not like that, but we have also duties: Patient Empowerment also means that we have the duty to learn how to take care of ourselves, taking care in the broader sense, that is. Coming up for our rights is one thing, but performing and doing things in the right and correct manner is another. Being assertive the right way!

We found it an educational seminar, good speakers, workshops and discussion with people from all corners of Europe. Everything was organized very well by EPF, beautiful hotel room, fine food, etc. Vicky and I have enjoyed ourselves, but mostly we learned a lot of new things and were able to broaden our networks.

Yesterday, we had an appointment at University Hospital Ghent for research and testing to show relationship of a dysfunctional autonomic nervous system and Ehlers-Danlos Syndrome type III. With three we were yesterday. Karen, Vicky and myself. We had several tests to do ... Next week we will go back to repeat everything again and then Kelly will be present as well. We are not going to disclose much of our research results, as we do not want to influence other patients that still have to undergo testing. We also want to give Inge the opportunity to present the results as part of her doctorate. At the end of the studies, we will disclose more.

The experience has again been extremely confrontational and we were forced to face the reality on how debilitating EDS could be. In our minds, we still are Super Women, but yesterday made us realise we are NOT!