Stacey Fuller's Fundraiser
Support #myEDSchallenge and help me reach my goal!
Together we can improve the lives of all with EDS, world wide
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$25
I have joined the May Awareness Month Challenge to spread awareness and raise funds to support The Ehlers-Danlos Society by participating in the #myEDSchallenge. Please support me by donating to my fundraising page. Together, even a small amount can make a huge difference!
As a baby, my mom says I had trouble learning to walk and once I could, I had trouble staying upright. Since then, I've been clumsy and have tripped over my feet and air! My whole life I've had issues with spraining ankles, dislocating my patellas (knee caps) and all of my joints. Party tricks, such as bending my fingers all the way back, may look funny, but it's not. I always thought my pain was normal and that everyone had the same issues - who knew writing wasn't supposed to hurt? It took until I was 33 years old to realize, my body's aches aren't the norm.
In October 2018, I was clinically diagnosed with hEDS and will be undergoing genetic testing to determine which type I have soon. With this explanation of why my body was failing, I learned about many of the comorbidities that align with EDS, many of which I have.
Since October, I have been diagnosed with:
- Ehlers-Danlos Syndrome
- Mast Cell Activation Syndrome (MCAS)
- Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
- Small Fiber Neuropathy
- Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS)
- Thoracic Outlet Syndrome (TOS) - Neurogenic and possibly Arterial
- TMJ Dysfunction
- Atypical Facial Neuropathy - Possible Trigeminal Neuralgia
- Contact Point Headache
- Early Sjogren's Syndrome - "Sicca Syndrome"
- C8 Radiculopathy
- Carpal Tunnel
- Chronic Fatigue
- Depression/Anxiety
- * I may have Hereditary Angioedema
- *I may have Craniocervical Instability
Every day is a different battle. Some days I fight hard, others I lay in bed all day. My strength has come from my inherent stubbornness. I will never be "cured", but I will hopefully keep evolving and use my stubborn abilities to continue seeking treatment and making my body the best it can be.
I may never run a marathon again and my goals for completing an Ironman are gone, but I'm here and I will find new passions - such as cats!
Help me spread awareness and raise money for research so we can improve the lives of those with connective tissue disorders, together.
Thank you so much for reading part of my story and for anything you can do to help contribute.
Love,
Stacey
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 to participate in the #myEDSchallenge by donating. Thank you!