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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
 

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

“[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

Telling Others

“I think 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

“I think 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

Fertility and Genetic Testing

“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

“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

Emotion and Grief

“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

“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

Resources and Selfcare

“I have learned that I don’t have to hide it [my emotions].” - Jamii, Rare Mother and Carrier

“I have learned that I don’t have to hide it [my emotions].”

- Jamii, Rare Mother and Carrier

Insights and Wisdom

“All together it's very scary. We aren't without hope, but at times it seems insurmountable.” - Jessica, Rare Carrier

“All together it's very scary. We aren't without hope, but at times it seems insurmountable.”

-Jessica, Rare Carrier

Interested in download these graphics?

 
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 "The Voice of the Rare Carrier workshop was amazing. Our communities are built upon connection, meeting people in real-life face to face and getting to know them on a deeper level. That is what this world is all about and this workshop gave us a great platform to do this. I made some genuine friends and connections here that allowed me to share my experiences, my journey, my successes and my struggles, with them. No judgment, no fear, no guilt…just an open space and opportunity. I loved every bit of this workshop and hope to be included in more in the future. It is all about learning from each other, advocating for yourself, supporting everyone and really connecting. Isn’t that how life is supposed to be? It really was the perfect amount of time each week and length of program."