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My EDS Journey by Yolanda Smith

It was a sunny Thursday morning the 21st of May 2009. I had my singing lesson planned for 8am. But my singing teacher realized within seconds that I would

not be able to sing. She wanted to take me to the hospital but I decided to drive myself. As a qualified nursing sister/midwife I was taught: “Do not panic or panic slowly”. I was 25 weeks pregnant and I was not in labor but on that morning I could hold my uterus in my hand. #Uterineprolapse is a condition that happens to about 30% of post menopausal women as a result of damage when they gave birth normally multiple times and the hormonal changes of #menopause.

I was 27 years old and it was my first pregnancy so I have never been in labor. So why did I have a severe case of uterine prolapse that early? The gynae at WITS said it is exceptionally rare in a first pregnancy. Since I can remember my parents took me to about 60 different doctors and I had 17 times general anesthetic to do some surgery or procedure and lots and lots of tests. For years I’ve had various symptoms including chronic pain, nausea, heartburn, dizziness, pins and needles in my legs, feet and hands, double vision, nearsightedness, easy bruising, slow wound healing, severe bleeding…

Nobody could ever explain why I had so many medical problems from my head to my toes and why I needed surgery from my eyes to my toes. Each specialist focused on their small area of the body and nobody looked at the big picture. But the gynaes realized there can only be one cause. I was born with a genetic defect in a protein called collagen. #Collagen is like the glue that glues your body together. When your collagen is weak your body falls apart. It is like building a house with weak cement. The house may look nice in the beginning but over time with the storms of life the walls may start to crack and the roof may collapse.

#Ehlers-Danlos Syndromes (EDS) is a group of 13 connective tissue disorders which all has different types of defects of collagen. The most severe type is vascular type which causes spontaneous arterial/organ including uterine rupture and early sudden death in usually age 20-40. #Hypermobile EDS also written as hEDS is the most common type and results in multiple problems from head to toe which over time leads to disability and is unpredictable and progressive. There is no cure for any type of #EDS. There is a 50 % chance of inheritance. Both men and women get EDS. Many years ago a doctor told his medical students: “When you hearhoofbeats think horses not zebras.”The students were taught to diagnose common illness and not rare diseases. Medical zebras became a name for patients with rare disease.

For 20 years the Ehlers-Danlos National Foundation in USA has been trying to raise awareness and support research to try and help EDS patients and their families. The EDS patients started calling themselves zebras and started wearing zebra stripes.

In 2017 the first International Symposium for EDS took place in New York and a new international diagnostic criteria for EDS was developed. Some patients who have many of the EDS symptoms but who do not meet the full criteria can now be classified as having #HypermobilitySpectrumDisorders. With the symposium the Ehlers-Danlos Society was formed and they are now globally trying to help all EDS patients. Through their support and information via email and Facebook I received a lot of help.

To this day the 16th of Feb 2018 in Johannesburg South Africa I still do not have a doctor who has been trained on what, how and what to do with EDS. My current GP prescribed medication for me as adviced by the Ehlers-Danlos Society’s articles. My medicaton helps for some of my symptoms and hydrotherapy also helps a lot. Your are probably asking what about my baby? That is a very long story. I’ve written a book about him and all his medication, surgery, therapy, remedial education… but I’m struggling to get it published. According to the Ehlers-Danlos Society EDS is not actually that rare. Estimated 1 in 5000 people have EDS in all cultures. But most doctors have no idea how to diagnose or treat EDS and medical aids do not recognize it as a chronic illness so they don’t pay for many things.

So how many south African Patients are struggling in pain without any diagnosis or help? I’ve only recently found Rare Diseases South Africa on Facebook so I’m hoping RDSA will help to raise awareness. I have my own Facebook page “Yolanda Smith EDS Nurse”On it I share photo’s and information about EDS that I get from others around the world and I also share the one thing that has helped me through all the years and that is my Bible and Prayer. Jesus loves me this I know for the Bible tells me so. He is the One who has helped me through all the years when humans often just walked away.

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