What does it mean to be the carrier of a rare disease ~ a ‘Rare Carrier?’
The experiences of Rare Carriers are largely hidden. Many Rare Carriers feel their stories are overlooked. They describe not being able to see their stories and experiences in other families. Rare Carriers have many questions and fears about the future, but are often unsure where to look for support.
To raise awareness of the Rare Carrier experience ANGEL AID gathered 24 Carriers from around the world to shed light on their unique challenges.
For six weeks, ANGEL AID Health & Wellness Practitioner, Dr. Chelsey Hauge, guided participants through a series of thoughtful prompts that focused on topics such as grief, relationships, fertility, genetic testing, identity, and more. We captured these conversations in six shareable infographics ~ graphic testimonies of the emotions, concerns, and triumphs of Rare Carriers.
Each workshop included a live, virtual group discussion that was then graphically represented by our facilitator, Dr. Chelsey Hauge-Zavaleta. Between workshops, participants responded to a series of additional prompts via our vlogging platform, Moodify. The Rare Carriers were encouraged to share their moods and emotions via Moodify, as well as support others in the community with video responses, and they did so beautifully.
These insights encompass the ‘Voice of the Rare Carrier.’
“I just want to educate people about what being a Rare Carrier even is. People don’t know much about genetics or how any of it works, and I want to explain that to them and tell my story...I think that is the only way to make people understand certain things. It can happen to anyone.”
— Kelsey, Rare Mother and Carrier
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KNOWING OF THE DIAGNOSIS
“[Knowing my diagnosis was] a relief. It had been so long searching for answers, years...I wouldn't realize just how much it would change until now; looking back four years in hindsight, every aspect of my life is changed.”
- Marcelle, Rare Carrier
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TELLING OTHERS
“The hardest thing about telling is conveying your emotions and reasoning in the best possible way to have people understand…it’s hard knowing that retaliation is possible for your most difficult decisions and situation in your life.”
- Kelsey, Rare Mother and Carrier
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FERTILITY AND GENETIC TESTING
What should we know about the services you provide? Better descriptions result in more sales.“My future went from planning on trying to start a family this fall after we get married, full of hope, excitement…to a giant question mark, so much uncertainty, worry, and even some dread or doubt about if this is even the right thing to do right now. ”
- Jessica, Rare Carrier
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EMOTION AND GREIF
“I figured out that what I feel about that [my children and grandchild that are Rare Carriers] is sadness, not guilt...so maybe you might think about that and analyze when you are feeling just plain sad that something was not within your power to change, or whether you are feeling guilt.”
-Phyllis, Rare Mother and Carrier
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RESOURCES AND SELF-CARE
Description goes here“I have learned that I don’t have to hide it [my emotions].”
- Jamii, Rare Mother and Carrier
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INSIGHTS AND WISDOM
“All together it's very scary. We aren't without hope, but at times it seems insurmountable.”
-Jessica, Rare Carrier
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