Fabry Support & Information Group (FSIG) and TREND Community Host Meet-Up With Young Adults

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Living With Fabry Disease: Voices From Young Adults

Young adults (YAs) living with Fabry disease (FD) face a unique set of challenges as they transition from the teenage years into adulthood and take on more responsibilities in managing their condition. In an effort to better understand the lived experiences of this group, the teams at Fabry Support & Information Group (FSIG) and TREND Community partnered to host a live meet-up on June 9-11, 2023. Unsurprisingly, meeting live with peers living with FD and without parental involvement empowered these YAs to open up and share their experiences to deepen our understanding of living with FD.

Some key unmet needs were uncovered, including:

  • The need for more assistance with the complexities of the health insurance market.
    • Navigating the world of insurance is difficult enough for the savviest person, but being young and inexperienced combined with living with a condition that can impact one’s cognitive function make health insurance even more daunting.
  • Timely access to genetic counseling, family planning services, prenatal screening, and other support services is critical.
    • The genetic nature of the condition means that YAs living with FD in long-term romantic relationships begin family planning conversations sooner than their peers who are not living with FD. These services must be made available early and often.
  • Strategies for managing their physical, mental, and emotional health and staying informed about treatment options in development and ongoing clinical trials are needed.
    • These YAs shared that the frequency of symptoms and limited efficacy of current treatment options are barriers to seeking care. Pain, digestive symptoms, headaches, and the anxiety that accompanies intervention-seeking are identified as symptom areas for which more help is needed.
  • Greater awareness, education, and accessible tools that facilitate learning by family, friends, and the broader community are needed; the responsibility to educate should not land on the shoulders of YAs living with FD.
    • Disclosure of a chronic diagnosis to partners, family members, friends, and coworkers can present many challenges. Being seen as different, being asked if the disease is contagious, and being discriminated against at work are realities faced by these YAs. Education will help build the necessary support network to help these YAs better manage their condition. Popular means such as Instagram stories and TikTok are viable but the accuracy and trustworthiness of the information must be ensured.

This work highlights the opportunity for advocates, caregivers, healthcare providers, pharmaceutical sponsors, researchers, and other Fabry supporters to address these unmet needs and ease the burden experienced by young adults living with Fabry disease at a key time in their lives.