By pursuing the most innovative research, educating the medical community, general public and affected individuals, and providing support to patients, families, and caregivers, we can charge forward and improve the outcomes for those living with VEDS.
It is difficult to experience another one of her birthdays without her. Leah would be turning 23 on March 12, 2024 but on May 8, 2021 this world changed forever. Leah was an amazing daughter, granddaughter, niece, sister, cousin, friend, and roommate. To know Leah was to love her. She had the most beautiful blue eyes and red hair. She had the most contagious smile and laugh. Leah had the most energy in any room she walked into and you could always catch her dancing. All you had to do was look at her, see her smile, and you knew everything would be okay even if nothing was okay in that moment. Not a day goes by where we all don't think about her and miss her.
Leah was a nursing student at Bloomsburg University and she would have graduated in May of 2023 alongside her friends and roommates. It is difficult to think of a future without Leah and the huge milestones she would have hit at this point. It is a definite that by now she would be an incredible nurse somewhere helping change the world for the better. We wish nothing more than to have been able to witness this. This fundraiser is not only to raise awareness and funds for the VEDS Movement, but to also honor our beautiful Leah on her upcoming birthday and keep her legacy alive. Any donation or share means the world. Thank you in advance.
Vascular Ehlers-Danlos Syndrome (VEDS) is a life-threatening genetic connective tissue condition. Early diagnosis can save lives.
Vascular Ehlers-Danlos Syndrome is a genetic disorder that affects the body's connective tissue. People with VEDS are born with it, but features of the condition are not always present right away.
Every person’s experience with Vascular Ehlers-Danlos syndrome is slightly different. Some may have every feature, some may have only a few features, and other people have different combinations of features. Some people may not have outward signs at all. Some signs of VEDS are easier to see than others. These include:
- Thin, translucent skin with increased vein visibility
- Characteristic facial appearance (thin lips, small chin, thin nose, large or deep-set eyes)
- Premature aged appearance of the hands and feet (acrogeria)
- Hypermobility of small joints (“double-jointedness”)
- Gum recession and fragility
- Born with a hip dislocation or clubfoot
- Tendon and muscle rupture
- Keratoconus (cornea of eye bulges outward causing thinning)
- Early onset varicose veins
- Spontaneous or easy bruising that is not explained by other causes
- Formation of a carotid-cavernous sinus fistula (sudden engorgement and redness of the eye)
- Sleeping with the eyes open or partially open
Spread awareness and know the signs of Vascular Ehlers-Danlos Syndrome (VEDS) and the other types of Ehlers-Danlos Syndromes. It can save lives.
To learn more about VEDS visit: https://thevedsmovement.org
https://www.annabelleschallenge.org
and https://www.ehlers-danlos.com
Happy heavenly 23rd birthday. You are loved and missed beyond words Leah.
