This is an interview I did with Adrienne, this is her journey, she describes her experience in an essay form. She shares her journey living with Ehlers Danlos Syndrome, and Postural Orthostatic a Tachicardia Syndrome.
What is EDS http://ehlers-danlos.com/what-is-eds/
Learn about POTS http://www.potsuk.org/types_of_pots
My name is Adrienne Ferron but my friends call me Ana. I am 35 years old, married with two children. I live in Atlanta, Georgia. I was diagnosis with Ehlers-Danlos Syndrome and POTS. I also have some bladder issues and IBS-D.
My life changed 2012 right before and after the birth of my son in 2013. It started off with migraines daily to the point I couldn’t see. By the time I gave birth it had gotten worse.
I have my first dislocation when my son was 6 month old. My life before my diagnosis was peaceful. I was a working mom of a teenager and loving wife. Life was good! My life changed drastically due to the severe pain and constant dislocations.
I never imagined that I could feel the pain that I have been going through. Pain is emotional and can affect your mental status many times.
My daily life consist of getting my son ready for school and making breakfast. Thank God my husband has prep breakfast for us because my wrist and fingers constant dislocate. So I toast some waffles for him. It’s his favorite breakfast!! After dropping him off the school, I come back home to get ready for physical therapy and occupational therapy. My son is in school from 9am to 1pm. I try to fit doctor appointments and my therapy in before I have to pick him up from school.
After school it is about play time which can be difficult but I try to do as much as I can with my son. I want him to remember that his mommy was a fighter and even though she is in pain, she took care of me with the best of her ability. By 7 pm it is bath time and we love bath time because of bubbles and singing songs. By 8pm Alexander is off to sleep. That gives me time to take a bath of my own and just relax.
The most challenging thing that I have faced with EDS is the dislocations. My joints can dislocate at anytime and moment from the most simply things. From holding a pen to coughing can cause a painful dislocation.
I’ve lost a lot of people that I thought was friends because they couldn’t handle my situation and that made it hard emotionally, physically and mentally to keep up with others. I realise that some people just can’t handle it and because I can’t do the same things like I used to doesn’t mean I am not human nor have feelings.
In the EDS community we have a mascot of the zebra, I love my zebra sisters and brothers because we can share with each other different aspects of our lives and support each other. We may not have the same type of EDS but we are all one family. Having a support system is something very important to me because I know I am not alone.
To people who aren’t living with a chronic disease, please don’t judge someone like me. Some of us wear braces, use walkers and wheelchairs, the constant stares can be humiliating and uncomfortable. I feel more comfortable when someone ask me about the braces and the cane than to stare. I know I am young and this disease ages our bodies. I am 35 but my body is of a 75 year old. We are human and we just want love and support. Don’t feel sorry for us because we don’t feel sorry for ourselves.
Thank you for reading Andrenne’s story.
Stay tuned for more interviews.