Daphne has to look for another hospital: 6 months, that's too long woman

Daphne: "Connective tissue is the" glue "of your body It is essential that your muscles and organs are protected and preserved In people with EDD, tissues weaken or tear and tear

Pregnant

I could always twist or bend parts of my body farther than "normal" people One week I was walking on crutches because I had walked through my ankle, the next week I was in a wheelchair because I had also just sped on each other.

My parents, doctors and I still kept my complaints of hypermobility .But when I fell pregnant, there was more than that, it was only then that I discovered that my connective tissue was very weak and that I had an SED.

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Excessive pressure would cause such pressure on the connective tissue around my eyes that it could rupture. But we ignored this advice and our daughter Celia (now 4 years old) was born naturally.

Do we become more pragmatic?

Hereditary

EDS is hereditary and is the ballet lady of Celia. , the teacher and I are already seeing signals; it regularly crosses the ankle and has fluid in the knees. To be able to do the same thing as her friends, Celia needs a lot more energy. If she does have an SED, that does not mean that she is very sick.

Celia is still young and has plenty of time to train her muscles and pay close attention to her vitamin values. If I had known before that I had this disease, I would have probably felt much better now. In the current state of things, I do not know if I will last another year, physically and emotionally.

Suspectable

My stomach is swollen, putting great strain on the connective tissue. When that ends up tearing me, my organs are no longer protected and I am very susceptible, for example, to peritoneal inflammation.

Thanks to my probe, I get nutrition and preparation to keep my stool as fluid as possible, but in reality, I just have a stoma. necessary. I must also be operated on the ear. Inflammation of the sinuses puts pressure on my eardrum and when it tears me, I am almost deaf.

Insurance

In the MC Slotervaart, Marjolein van Looij treated me; a very kind medical doctor who has always done everything to help me. Especially for me, she learned everything about EDS. But now that the hospital is closed, the question is where do I go? Fortunately, something has been arranged for my operation in the ear, but there is still a lot of uncertainty about the stoma.

I discuss with insurance, but in principle, it's up to me to find another hospital. That's how I started looking, hospitals are calling in the hope of wanting an EDS patient. staff shortage ok, it takes at least 6 months. I can not wait so long. Because if my belly wall breaks? It could go wrong.

What about a miscarriage?

This whole situation is terrible not only for me, but also for the staff of Slotervaart Hospital. They have not been paid for weeks, but the way they treat their patients concerns me. So sweet, so involved! I think it's admirable. When I arrived at the week with a thank you, tears were in their eyes.

Mobility Scooter

I owe to Celia and my dear husband that I am still alive. They keep me strong, make me want to keep fighting. Celia has already lived a lot for a 4 year old girl. When I faint, she knows exactly what to do. Then she opens the door, she calls her father and puts a cold cloth on my neck.

It's good that she helps wherever she can, but that's not how it should be. That's why we also try to have a lot of fun. I had my scooter pimpered; it's pink with black zebra stripes. Together, Celia and I are singing loudly in the neighborhood. We make the most of it, they do not make us small! "

" My child (3) does not listen. Simply. Really. No.