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Mel’s Story (EDS, Marfan Syndrome)

EDS StoriesMy journey was a long, hard road attempting to find out what was TRULY wrong with me. For the first 22 years of my life, all of the family members and adults in my life looked at me like I had lost it when I would complain about the pain that radiated all over my body but seemed to originate from my joints – or better yet, they would tell me that it was growing pains – every single day of my life. I remember looking at the other children on the playground and thinking, ‘Why don’t they hurt from growing, too?’ The pain got so horrible when I was a teenager that, without knowing why, I would have drastic mood swings when I wasn’t taken seriously, leading to a false diagnosis of Bi-Polar disorder. I can tell you first hand that pain CAN make you crazy.

So, I soldiered on, and did what was expected of me – I received my first Bachelor’s Degree in Culinary Arts & Sciences at the age of 20 (I had always been an over achiever), continued to dance, got married for the first time, and had (albeit premature) babies that I adore. Yet, the ‘growing pains’ never seemed to stop. At 22, during my first divorce, I met my future soul mate and husband, Dave. Watching me one day, he noticed that to ‘alleviate’ the pain I would ‘stretch’ – by kneeling down on the floor, leaning back flat, dislocating my knees, hips, shoulders, and elbows, all while I would twist my back into shapes that are not normal for a human being. His first response was, ‘That’s disgusting.’ His second was, ‘You need to see a doctor about that.’ The problem was that I didn’t have insurance and wasn’t eligible for State assistance – so we had to do the rounds at the ER as the pain would come on, just to try to make it through the flare.

A month before my 25th birthday, my divorce was finalized – and I got remarried on my 25th birthday, and obtained insurance, finally. But it still took a long 2 1/2 years, and 60 doctors total to hear the words, ‘Mel, I have bad news – you have Ehler’s-Danlos Syndrome AND Marfan’s Syndrome. It’s such a rare mutation that we can’t even classify it as a Multiple Connective Tissue Disorder. You just ARE.’ – 10 days before Christmas, on the very same day two years prior that we were told that my father-in-law was going to die of pancreatic cancer. To make matters even worse, I was in the process of getting a second degree in Business Management. I had already lost an ovary on my 26th birthday due to the inability that my body has to process collagen and my hormonal imbalance that comes with the Arnold Chiari Malformation that can accompany EDS. Life had become a roller coaster.

But in my family, we have a motto that was taken from a song that my dear friends in Canada recorded, ‘You’ve gotta fight for your right to party – FIGHT LIKE A BRAVE!’ We only allow ourselves to mope for 3 days before we have to come back to the real world when we get bad news. We view everyday that I can get out of bed as a celebration.

In 2009, at the age of 28, I had a heart attack, but that didn’t stop me from finishing my degree – and not only on time, but early.

As I sit here now, at 31, I am still reeling from the news that I will need a partial hysterectomy by the middle of September (my 32nd birthday) because my inability to properly produce collagen has caused me to have a prolapsed uterus that causes so much pain and heavy bleeding that I can’t move for 10 – 14 days at a time. But you know what? It doesn’t stop me. I still run a home bakery business, am a loving wife and mother, and I reserve my right to fight like a brave, in only a way that a girl can!

Mel
Oregon
Submitted 07/22/2013

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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2 comments

  1. Wow, I’m so sorry Mel 🙁 I just have Ehlers-Danlos Syndrome, Type III, and I can’t imagine having Marfan’s on top of it. They are two separate mutations, so it’s definitely possible, but I imagine it’s very rare. I’m so glad you have a good marriage now. I’m sorry for the health issues. I’m going on my 3rd major hip surgery before 30 years old. I’m glad you are still fighting to be awesome because it’s tough having a connective tissue disease. I fight chronic pain every single day, and know that I will never live another day of my life without it. I’m finally okay with that. Trying to make the most of my life given my limitations.

  2. Hello Mel,

    Thank you for sharing your story. I understand about it taking years and years of trying to get accurately diagnosed. And the word “battle” means many things to me. This Marfan Syndrome disorder is no easy journey to be on and yet, there is much to feel thankful and hopeful about.

    Take good care and please know you are not alone as you travel down your life’s path. Somehow I can’t help thinking about all of the good that comes from feeling close to our own and others’ humanity each day.

    Life is precious and very good (even with the challenges of Marfan and other disorders)!

    Strength and well wishes to you,

    K.

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