My name is Brooke, I am 36 years old and from Pennslyvania, USA.
When I was 4 years old my parents noticed I was not growing at a rate like most kids my age. I was sent to the Danville Children’s hospital to go to a endocrinologist pediatrician and was told I had a growth hormone deficiency. I was considered failure to thrive. I was put on a growth hormone medications, which meant that every night I would get a shot that my parents had to give me.
I started complaining of pain at about 5 years old and then by the time I was 7-8 years old, I was getting headaches daily, stomach issues, balance issues, constantly being sick with viral and bacterial infections, breathing issues etc and was told I would “grow out of it”. I stayed on that shot till I was 12 years old before both my parents and I made the decision to stop it because it was not doing what they said it would do for me. It was affecting my school education, since I had to miss so much school of being sick and going to the doctor or hospital.
By the time I was 13 years old I really started to realize I was not a “normal” kid like the others. I couldn’t keep up with kids my age. Then vertigo issues started and so many other issues, but was being dismissed by doctors being told now it just my hormones as a young teenager, and that all continued dismissed and symptoms just got worse.
About 6 years ago, I went to the hospital because I felt like I had cold like symptoms. Within two hours of me walking in I went into respiratory failure which caused me not be able to speak, eat, or even breathe on my own. I was in the ICU for a week on a bipap breathing machine and was told my body was shutting down and causing fluid of my lungs from all these different infections of my body attacking itself. I made it through that; I don’t know how but I did. And what would be the scariest week of my life caused doctors to take me seriously and REALLY look at my story of lifelong issues and that is how I found out I have hypermobile EDS.
Since then I have gotten over 20 diagnoses, over 15 medications, and even though it doesn’t take away my issues or “cure” me it has helped me learn, navigate life and educate others. It is by far not easy but what I have learned through this experience is being your own advocate is absolutely so important! I am continuing learning through therapy and education that I am not my diagnosis’s and it doesn’t make me weak.
I have a purpose in life despite what I deal with on a daily basis, I am here. Some days are harder than others. I know I am blessed that I have a mom, husband and some family and friends that help me get through some days. Oh and also my little fur babies! I am so blessed that I now have after 30 years of being dismissed, I have find a few doctors that have saved my life and validate me. It gives me hope. Sharing our stories is so important for stories like mine or even loved ones to learn how they can be supportive in something so complex.
