Patient care is not always about keeping up with doctor’s appointments and medications, it’s also about how we feel in our own skin, our social interactions and relationships.
In 2018, HNF hosted its third CMT Summit with a focus on behavioral health. Through multiple surveys and group discussions, we were able to gain a better understanding of the significant effect CMT can have on emotional health. Everything from dating to body image, family, career, fashion, grieving our old lives and more were addressed at this event.
As patients ourselves, we truly understand how isolating CMT can sometimes feel. We don’t all have individuals in our lives who can relate to our everyday struggles. There is really nothing that compares to meeting others who are going through similar experiences and who “get it”.
This summer, HNF jumped into unchartered waters to bring some ”real talk” into the daily lives of patients with the “EmBRACE It” podcast. Lainie Ishbia of Trend-Able blog and Estela Lugo of HNF are on a mission to empower the community with real life conversations around overcoming challenges, navigating loss, bracing, family life, wellness and more.
“We’re friends in real life, so the conversations are authentic and fun. We want our viewers and listeners to feel like they can relate to us, and that it’s perfectly okay to be imperfect!”
We are four episodes in and learning the ropes as we go. Our guests so far have included: Bernadette Scarduzio, from the CMT documentary, “Bernadette”, Jessica Ruiz, a disability advocate and makeup artist and Julie Stone, a CMT exercise advocate.
If you’d like to suggest any future topics or are interested in becoming a guest, contact us at [email protected]