Hello friends, family, and loved ones!

This May, for Ehlers-Danlos Syndrome (EDS) Awareness Month, we wanted to reach out to our community and share a little bit about Morgann's story and some of the needs we have going forward with new diagnoses and disabilities. Thank you for stopping by to listen!

As many of you know, in 2024 Morgann was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), a connective tissue disorder that affects the joints, skin, and other tissues in the body, causing fatigue and autonomic dysfunction, joint displacement all over the body, and severe chronic pain. Morgann racked up several new diagnoses last year, also scoring type 1 diabetes and chronic fatigue syndrome. You might think that they would have wanted to stop it there (and they did) but they also picked up hip dysplasia, arthritis, hypertension, sleep apnea, and 6 cavities!

Needless to say, we've made a lot of confusing and scary trips to the ER, and have been through a bevy of trials and errors as we attempt to treat the symptoms. Anyone with a rare, painful, or invisible chronic illness is no doubt intimately familiar with the distress and overwhelm that comes with this process, especially as everyday life is interrupted by severe symptoms and frequent medical needs. Morgann has been, and continues to be, an incredible trooper, but it doesn't ever stop being tough to watch them wake up in ER-worthy levels of pain each morning.

We've been incredibly grateful to our community for their emotional support, and for being kind and accommodating in small and ginormous ways as we learn how to survive with these new chronic illnesses. We want to be open about the real scale of these difficulties with you all and share the biggest roadblock we're currently facing, so our loved ones have the ability to pitch in as they are able.

Currently, the healthcare work Morgann loves and is incredibly talented at has become very difficult to manage due to the combination of severe pain, muscle weakness, and general fatigue that comes with hEDS. Their pain at the end of a workday, and the challenges of navigating the very beautiful but not very disability-friendly streets of San Francisco have made it really hard for them to be the fantastic nurse that they are in the streets, and just a less-tormented human the rest of the time. We’ve explored multiple mobility aids, such as using a manual wheelchair on outings, and a cane when a bit of extra support is helpful. However, it's quickly become apparent that the big-picture need is for a portable motorized wheelchair–something that can make a workday, an errand, or time out with friends and family more possible, less painful, and less potentially dangerous.

With hefty medical bills and lengthy insurance battles looming, we know we can’t make all the ends meet alone. If you are able to pitch in financially at this time towards this mobility device we are incredibly grateful–it will make our lives tangibly better for Morgann to have the physical support and agency that they need in order to spend time with the people and pursue the things they love. If you know someone who might be able to contribute, we appreciate you passing the link along. And for everyone reading this and being a part of our community, we love you, miss you, and are delighted to share a planet with you <3 Be well!