I can connect with my patients on another levelPosted June 1, 2021
I was very blessed to have an early diagnosis at five years old. Since my geneticist has played a major role in navigating my healthcare, I contribute my level of function and successful medical treatments to an early diagnosis. As a physician assistant myself, I personally know what it is like to be on both the patient and provider side of healthcare.
My symptoms mostly consist of easy bruising, excessive/stretchy/fragile skin, very hypermobile joints, early arthritis, recurrent joint dislocations, GI dysfunction, and heart defects. As a newborn, my parents had to carry me on a pillow because of how easily I bruised and cried with pain when I was picked up. After I was diagnosed, I was blessed to attend a school that was proactive in protecting my physical well-being and worked with fellow classmates to help them understand my condition. Every year my teachers would hold up a piece of loose-leaf paper, tug the sides and say “this is your skin” (it did not rip), then they’d take a kleenex tissue paper, tug the ends and say “this is Tiffany’s skin” (it would rip).
At age 24 I had my first orthopedic surgery. Due to excessive joint laxity, my ankles constantly dislocated with weight-bearing resulting in deformities and extreme pain. In 2010, I underwent bilateral triple arthrodesis (ankle fusions) and Lapidus bunionectomies. Throughout my childhood, I saw handfuls of orthopedic specialists from multiple states. After failing bracing and orthotics, surgeons said my case was inoperable, I would never heal, and that I would not be walking by the age of 30. While advised to apply for disability, I was referred to one last surgeon who explained the risks of not healing/failed surgery and agreed if I was willing to take these risks. Fortunately, surgery was successful, and this allowed me to continue ambulation and fulfill my dream of becoming a physician assistant.
In 2019, I underwent a series of heart procedures resulting in the diagnosis of a patent foramen ovale and POTS (postural orthostatic tachycardia). In 2020, I was diagnosed with bilateral AVN (avascular necrosis) of both hip joints related to EDS and dislocations throughout childhood. I was acutely unable to ambulate and underwent bilateral hip replacements. I am extremely passionate about raising awareness because I know what it feels like to be told “you look like the picture of perfect health, nothing can be wrong”. Having an invisible, debilitating, disorder is something many with EDS feel as though they must explain or even defend. When I was younger I tried to suppress this and act as normal as possible.
With age, new obstacles arise, and I no longer feel shameful or as though having EDS is a weakness. Quite the opposite, I believe patients with EDS are amongst the strongest and bravest of anyone. Today, medicine is very fast past and demanding, unfortunately, providers miss or are not aware of more rare disorders like EDS. As a provider, I am particularly able to connect with my patients on another level when it comes to managing pain and disabling disorders. The more awareness raised the sooner a diagnosis may be made to provide a better prognosis and quality of life.
My word to describe EDS is unpredictable. I have learned to have patience with my body. Diet and exercise have significantly helped me manage my POTS. Strength training with weights and a personal trainer has played a huge part in recovery. The stronger I am able to get my muscles the less my body has to rely on the actual joint. I am beyond grateful for my support system: my family, church family, friends, and trainers. I have never let this stop or hinder me from pursuing any dream and would encourage fellow EDS patients to stay strong and persevere on!Tags: cEDS, classical EDS
Categorized in: Stories