Putting the pieces together

Posted August 25, 2018

by Denise P.

My name is Denise and I am 40 years of age. I have three daughters ages 17, 11, and 6. We live on the outskirts of New York City. I recently was diagnosed with an Ehlers Danlos syndrome in 2017.

After a very long 40 year journey of orthopedic surgeries of torn ligaments to my right knee that ultimately failed time after time, always needing another reconstruction of the ligament. Ultimately in 2016, my knee needed a total knee replacement. That’s when we found out there was something wrong with me, not the surgeries, because my total knee replacement never fully healed. It has been a long road to recovery.

Since my knee replacement, I tore my MCL to the same knee. And keep tearing ligaments and other joints of my body. My shoulders pop out of place especially my left shoulder; I battle keeping it in place every day. My fingers in my left hand are very flexible and hyper-extendable and hurt when I try to grab anything, sometimes dropping what I’m trying to hold in my hand if it’s fairly heavy. Holding grocery bags are a challenge for me, I feel every joint in my arms, wrist, elbows, and shoulders pull apart just by holding a bag. I can’t stand for very long; my legs start to hurt, throb, and then I can’t move. If I sit for too long I become very stiff that when I stand I feel like I’m a hundred years old. I need to take my time for my joints to catch up and it tends to be very painful.

I also have many allergies. Anaphylaxis allergies to too many things. But yet, I have not been diagnosed with mast cell activation disorder, which to me is pretty obvious. I suffer from fatigue, fibromyalgia, and other chronic illnesses besides EDS. Sometimes I can’t function from the physical pain and emotional strain. But I am getting to know my body and how to function with all these debilitating invisible chronic illnesses.

I suspect my three children also have different variations of EDS and we are on the road to getting them diagnosed. My oldest 17-year-old daughter has torn her ACL in her knee twice and her meniscus. My middle child is super flexible does things that no one else can do but she’s very functional. And my six-year-old has a lot of GI issues since birth and many hospitalizations due to GI backups. My six-year-old has also problems with her hips and knees and has had physical therapy for them but also overlooked by a pediatric orthopedic doctor when I mentioned the EDS possibility. I just feel that she is very visible EDS child. And because of a lack of knowledge with doctors, my child has not been diagnosed. She’s constantly in pain; hips, elbows, and knees.

I have a very extensive medical history, and after being diagnosed with EDS, the puzzles pieces fit in and everything makes sense as to why my life has been the way it has been. So I would like to take this opportunity to help raise awareness in an area that is still in the dark.


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