Hannah Budde's Story of Hypermobile Ehlers Danlos Syndrome and Mild TBI

The Spoonie Struggle

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Episode 32: Hannah Budde's Story of Hypermobile Ehlers Danlos Syndrome and Mild TBI

In this episode, guest Hannah Budde shares her story with mTBI and hypermobile EDS. She also has POTS, pelvic floor dysfunction and prolapse, interstitial cystitis, craniocervical instability, asthma, and thoracic outlet syndrome. She has experienced several head injuries. Her last one was in 2013, and she experienced brain fog, fatigue, and head and neck pain. She went to a brain injury clinic, which was really helpful for her. In 2018, she moved and she was involved in physical rehabilitation, where a neuropsychologist told her that her problems were all anxiety and mood and was very dismissive. She tried lots of treatments for her condition, to no avail. After receiving poor treatment, she found a neuroophthalmologist who did a more thorough examination and suspected that Hannah had EDS. She saw Dr. Zingman, an EDS specialist, where she was diagnosed with EDS. She underwent testing for POTS, and the diagnosis was confirmed. She received a lot of new diagnoses in the past year. She recently started with a new physical therapist, which has been very helpful for her.

She learned to advocate for herself not only with doctors but within her family. She makes sure to prioritize her health and her wellbeing. She gets creative with parenting, to make sure she cares for her children and takes care of herself.

She adapts her parenting by doing a lot of sitting on laying on the ground, putting a stool next to the car to help them climb in the car by themselves, refraining from lifting her kids, minimizing physical activity, energy conservation, planning, fatigue management, and use of a babysitter.

She copes by using medications, physical therapy, deep breathing, using a neck brace, distraction, talking to friends, and using Instagram. She is honest with people in asking for what she needs and letting her know her limits.

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