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I know I am a warrior By Suze

Ehlers Danlos Syndrome, Pregnancy, Life and Everything Else

I am sharing my story, in the hope that it may create awareness in the medical community as well as with the general public. This is not an easy thing to talk about and I hope that those who know me,will not start treating me with kid gloves. I have spent my entire life disguising and hiding my condition in order to fit in and not feel like such an alien; because this is how acknowledging it, has made me feel in the past.

I was diagnosed very early in life by my wonderful GP. It was a miracle that he knew of it in the first place.

As a young child, I would get huge bruises on my body from small insignificant injuries. This resulted in teachers constantly calling in my mother to explain them. The very little that was known about the condition was that I was prone to bruising and burst blood vessels due to “loose connective tissue”. When I was in school, I was forced to participate in P.E, or physical education and sports days. Back then, we all had to do these activities bare feet. Besides the humiliation I endured from being teased about my “flat” feet, it also meant that I would end up bruising and bursting blood vessels in my feet, resulting in swelling and pain. I soon learnt to find excuses not to participate, because the teachers and my fellow pupils simply did not understand or believe me.

Life was a lot less politically correct in the 80”s. One of the symptoms of #EDS is very soft skin, which can be both a blessing and a source of astonishment to others. I have had countless comments about the softness of my hands and body. From random strangers shaking my hand. to massage therapists that practically say “”Euuu””. I also have #hypermobility, which means that yes, I can do the splits. I also dislocate joints. My right shoulder has “popped” out of place several times. The first time it ever happened, I was about 9 years old and I thought I was dying. Ironically though, the hypermobility means that it “pops” back on its own after a few minutes. My wonderful mother, thankfully, decided, that I needed exercise to help with these symptoms.

She would take me with her to her yoga classes when I was still a baby and I started to learn yoga poses when I was about 4 years old. I was also put into gym and dance classes. I loved dance and still do, but it was really hard for me when I started. My feet cramp and I have difficulty with balance to this day. I have now learnt to overcome this by wearing the correct shoes, binding my feet and wearing inserts that give me an actual arch. Exercising and strengthening the muscle around the joints means that

the dislocations have now not occurred for several years. It has been my most successful form of therapy.

I have also had bouts of chronic fatigue and brain fog over the years, which everyone around me put down to being “lazy” and “clumsy” My blood pressure is normally low or “optimal”. However, if I start to feel squeamish or unwell, it skydives down, which results in my passing out. I now know that as soon as I feel that coming on, I need to lie down and breath!!!!Due to growing up in the age of a lot less information, I had to find coping mechanisms to get me through. The first time I actually saw a brochure about EDS, which was sent to me by my sister in the UK, I was 23. I remember reading and re reading this highly clinical description of myself and deciding then and there that I was not going to be defined by it.

It was devastating to say the least.I had two choices. Either pronounce myself disabled and get into bed, or carry on with my life. I chose to continue regardless. I fell pregnant with my first child in 1994 and went with my tattered brochure to the gynecologist. He gave it a brief read through and proceeded to treat me like all his other patients. The only thing that was mentioned in this piece of literature about pregnancy and EDS, was that there were cases of premature births. Most EDS pregnancies that were know of at the time, resulted in early delivery. He “poo pooed” my concerns and told me that because of my hypermobility, the pregnancy and delivery would be “a piece of cake”.

My son was born 2 months premature, weighing 1.5kg. He went into an incubator for 21 days. When I brought him home he was a tiny bundle of 2.5kg. I went through a relatively uneventful post partum.A few years later I had to go into theatre for a “cervical scrape”. The first thing I was asked when I came around was about how soft my skin was. About two weeks later I started to bleed profusely and went to see my docter. He said that it was “normal” and that he had never seen tissue heal so quickly.

Well that sounded like a good thing. In 2002, I fell pregnant with my second child. We went to a new gynecologist with the same brochure and told him about the premature birth of my son.

The focus on my mind was to get to full term.During the last quarter of the pregnancy, I started to feel constant pain and was told that it was “braxten hicks”, or false contractions. Even when my baby kicked the pain was intense, but I was at full term and everything appeared “normal”. I went into hospital early one morning with what felt like contractions. When the monitor was put on me, the nurses said that I was not having contractions and to go home. This happened again a week later. I was told that there were no contractions. This time I insisted that they call the doctor because the pain was so intense. I remember one final wave of pain which had me literally screaming. From there on I remember only vague impressions until I “woke up” 5 days later.

My uterus had ruptured, resulting in my baby literally falling into my pelvis. They had to perform an emergency cesarean and hysterectomy, which was the removal of the torn uterus. Leaving the cervix and ovaries. I flat lined several times in theater and lost a huge amount of blood, which they were unable to stop. This resulted in my going into a coma. A specialist surgeon was called to stop the bleeding and “close me up”. When I eventually came around I found myself in the ICU, unable to move and was

told that my baby had not survived. The next 2 weeks were like being in the twilight zone. I was only able to move my head and wriggle my toes. I was left at the mercy of hospital staff.

My already bruised body was further bruised with nurses being unable to put needles into my veins for drips. I clearly remember the smell of my breast milk starting to flow and my hysteria when it happened. The most supportive medical person was the #physiotherapist, who, with a lot of firm encouragement and massage, managed to get my body mobile again. A year later, I started to experience terrible abdominal pain which escalated to the point that I was doubled over. Anything I put into my mouth would be promptly vomited up. I went back to the same specialist surgeon that had operated on me before and was booked back into hospital.

Another week of twilight zone, testing and prodding. I was unable to even have a sip of water without vomiting.The surgeon performed a full laparotomy. I had a twisted bowel, hernia and an ovarian #cyst. He commented that the abdominal tissue had healed remarkably fast from the previous operations and that my ovaries had shifted and were now “glued” onto my abdominal wall. This was right before he told me that he was not sure if “I would make it”. Well I made it. Recovery was a slow process. My abdominal muscles were torn and stiff. Once again, exercise and in particular belly dance, with its emphasis on strengthening the core was my saving grace. As I got older, I started to suffer again from periodic abdominal pain from both, surgical adhesion’s, as well as gastrointestinal complications. In particular diverticulitis.

This is an extremely painful condition, which requires antibiotics and a

complete change in diet.

I don”t know how many doctor”s have looked at me blankly when I go and see them, doubled over in pain, demanding antibiotics, because, ” I know what I am experiencing, so please don”t do any tests”. They have never heard of Ehlers Danlos Syndrome, let alone its various symptoms. I am now managing my gastrointestinal issues with a controlled diet and various homeopathic remedies. I am finding that recovery time with injuries takes a little longer and I need to be kind to myself. I have also researched and discovered alternative methods of healing, such as microcurrent, which is able to reduce haematoma drastically, as well as an assortment of vitamins and amino acid supplements.

Thanks to “Dr Google” and social media, I have come into contact with other people who have EDS. There are so many different “strands” and types and I often feel overwhelmed when I do brave to read more about it. I so admire the way that some of these amazing men and woman, boys and girls are able to look at their condition or disease head on. There is a medical term, Iv discovered, for just about every one of my “symptoms”. Who knew? I thought it was just me. The way that I cope or deal with my “condition” is to not see it as a disease. I refuse to call myself disabled. This is the body I was born with so it is all I know. I have found ways to strengthen myself physically and emotionally.

At my ripe age I still dance and I now teach Burlesque dance classes. You would never know if you had to look at me, until you get up close and personal. There are still things I will never “expose” and which to me, feel”freakish”. I choose to think of myself and others like me as “X – Men”. Genetic mutants. Perhaps our super power is in our determination and iron will. I recently had the pleasure to meet another “”EDSer””. What a beautiful powerhouse package at 28 years old. I went to see her in hospital, where she was recovering from several gastro complications. We went and sat outside to chat. As she told me about her particular operations and procedures, I began to feel more and more faint. I ended up lying flat on the ground, with rock bottom blood pressure and pouring with sweat.

She had a sip of coffee and proceeded to vomit. It was beautiful. There we were, in public, in all our glory. The fact that everyone was looking at us horrified and disgusted meant nothing. We recognized and understood each other completely. I went home and cried for three days So. This is my little story. My personal experience with “loose connective tissue disorder”.I don”t know how the remainder of my life will be but I do know that I am a warrior.If you are reading this and you too are a “Mutant”. I love you. “Rage, rage, against the dying of the light”.


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