Support #myEDSchallenge and help me reach my goal!

I have joined the May Awareness Month Challenge to spread awareness and raise funds to support The Ehlers-Danlos Society by participating in the hEDS Up: angie's hEDS Tales Challenge in honor of my late father. Please support me by donating to my fundraising page. Together, even a small amount can make a huge difference!

I had seen unexplained conditions in several family members, including my father all of my life, but did not make sense of it until after my father's untimely death a decade ago.

My Abridged Story I was in the 6th grade when I realized my digestive issues were actually abnormal. Though this was the beginning of my own personal realizations, it was not at all the beginning of my heritable conditions. Despite dealing with seemingly unrelated oddities and conditions I had a very normal childhood. I successfully navigated my early years in spite of a sensorineural hearing impairment, severe clumsiness, bladder and digestive issues, etc. By my teens, I began struggling with repeated spontaneous genuflection, severe subluxations, heightened sense smell, problems regulating body temperature, insomnia, exhaustion, etc—the list goes on.

Even though there were countless occurrences, aside from my spontaneous genuflection etc, there were three specific painful occurrences that stood out in my teens, that clearly indicated something was wrong.

1. During a math exam, I suffered a painful subluxation and locking of my right elbow doing nothing other than a stretch. My attempts to bend my arm were unsuccessful. After fumbling around with it for several minutes and gaining the perplexed attention of my teacher, I finally forced my elbow “back in place” with a loud “pop” which distracted the entire class and begged questions by my teacher, not to mention frowns from my classmates.

2. I suffered severe subluxation of my left knee while seated on the floor reaching forward to play a video for the children I was babysitting.

3. I developed unexplained Juvenile Periodontitis, requiring several surgeries, despite routine dental visits.

Nothing seemed related. The first two were somehow attributed to my dancing. I was a tap, ballet, jazz and hip-hop dancer and this fact easily became the blame for my many physical complaints. The third was said to be just an unlucky affliction.

Once I hit my 20’s the pain and confusion took over. I began having severe joint pain on top of repeated subluxations, unbearable headaches, vertigo, pinched nerves, insomnia, digestive diseases etc. My list of comorbidities grew exponentially in my twenties. I was collapsing both at work and in school. Doctors had no idea what was happening and attributed it all to stress. They told me to lighten my load by reducing my college courses. I would take classes early in the morning, work during the day and take more classes at night. In addition, I was dancing paraprofessionally, modeling and volunteering. I was also a runner and very athletic, playing competitive volleyball and softball in addition to running daily. I did not think there was merit in the doctors’ advice and did not heed their recommendations initially.

I married and started a family while still in college. My first born was a micro-preemie born just shy of 25 weeks gestation. I went into labor with my second child at 23 weeks gestation and thanks to a cerclage and bedrest, I carried him to term. Even though I continued my active lifestyle, at 24 years old, after I had my second child, I began to listen to the doctors and curtail my activities because I began to suffer many injuries. Even though I accepted treatment, I grew tired of seeking medical help because there were no answers. I received several diagnoses, some being attributed my dancing but no diagnosis ever answered everything I was experiencing. Perhaps the most boggling was trying to understand my intermittent bouts of immobility.

I endured more than two decades of fighting for answers as my afflictions grew, not to mention many surgeries, as well as a lifetime of battling conditions before I was diagnosed by a Geneticist with EDS. Suddenly, my entire life made sense. I have issues with my connective tissues! I now know why my ankles buckled during the 4 x 100 baton relay in middle school, costing my team 1st place; taking 2nd. I now know why I had exceptional turnout and flexibility in ballet. I now know the cause of my pre-term labor. I now know why I fall so frequently. I now know why I developed early onset osteoarthritis, early onset periodontitis etc. I now understand my spinal issues both cervical and lumbar. EDS affects me from sun up to sun down every single day. Now that I am understanding the cause of my conditions, I am compelled to bring awareness to further the research for hEDS and HSD so that there are answers for my children, grandchildren and so on. No one should have to endure a lifetime of improper diagnoses, improper treatments or dismissal altogether!

The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders that produce a spectrum of complex problems across multiple systems of the body. Symptoms that are often seen across all types are hypermobile joints, (that can move farther than normal), stretchy skin, & fragile tissues. Each case is unique and severity may range dramatically, even within families.

The Ehlers-Danlos Society is a global community dedicated to saving & improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, & related conditions. Our goal is world-wide awareness and better quality of life for all who suffer from these conditions, regardless of geography.

Please support me as I overcome my challenges with EDS by donating. Thank you!