A Call for Adults to Share Their Stories

Original Cystinosis Foundation logo. A girl and a boy holding hands on top of the world in blue. Beyond Borders is also written in blue around the image. Cystinosis Foundation is written in blue at the bottom. This organization was started by Jean Hobbs-Hotz in 1983.

Not too long ago, and even still in the present depending on environment, access to medical care, and nature of the illness, a child being diagnosed with a rare disease only lived into childhood or teenage years.

Parents should be thanked for their dedication in advocating the political and medical world for treatment and medical options for the survival of their children into adulthood today.

Largely, most rare disease organizations and foundations are led by parents whose children, teenagers, and adults live with the rare disease.

I just finished a book titled Diagnosis Rare Disease by Denise Crompton. She compiled a great resource with perspectives from 13 other mothers whose children live with lysosomal disease.

The parental perspective on their children, and some with adult children, living with rare disease is driven by survival and faith with love. Resources for quality of life, education, jobs, and social support comes from physicians and parents whose life revolves around their patient(s) or child(ren) living with rare disease.

I have questions:

Is having parental and medical voice paramount why there is a lack of stories being shared about adults advocating for their own support, education, jobs as they navigate life lived in the midst of hospital stays, clinical visits, and the day-to-day management of treatment?

And/or is their still a small percentage of children growing to adulthood that adult advocacy is often absent in the conversations surrounding how life is lived with rare disease?

And/or is it because adults living with rare disease spend so much of their energy and time on being normal adults (education, jobs, friends, and family) that becoming their own advocate and attending events where there voice could be heard just is too costly and time-consuming to consider when parents and medical providers generally have the finances, time, and purpose to do so?

Cystinosis Research Network logo. Images of non-specific people in green which form the shape of a letter C. Cystinosis is written in blue and Research Network is written in green. This organization was started in 1996 by Colleen and Jack Hammond.

Adults living with rare disease lead such diverse lives as their peers living without rare disease do:

  • adults sometimes still have their parents extremely involved due to how their illness and/or treatment of their illness affects their ability to go to school, to work, to manage their own home
  • adults sometimes manage their own home with the help of a spouse/partner and children or no children (which may or may not include parental help)
  • adults sometimes live with other single adults (with or without a caretaker) to help lead their lives

Any way an adult living with rare disease chooses to live their life is valid. Some have living parents who are involved, some have living parents not involved as much or not at all, and some have aging and disabled parents or parents who have died.

Each adult will have similarities due to same health diagnosis, but each life will expose a different part of living rare dependent on the race, nationality, ethnicity, gender, sexuality, class, religion, and ability the person reveals in their experience of rare disease.

I would like to work on compiling life with rare disease from the adults who live it. Any adult who wishes to share any aspect of their story and identity is encouraged to submit to this blog by reaching out to Rebekah Palmer at reba.palmer.87@gmail.com.

Not a writer? Consider submitting a video instead or consider sharing your story over the phone and reviewing what Rebekah writes down from your phone call.

Cystinosis Research Foundation logo. Hand-drawn yellow star is at the left corner. Cystinosis is written in black/blue. Research Foundation is written in black below the word Cystinosis. At the bottom the words Research/Hope/Cure appear in blue. Cystinosis Research Foundation began in 2003 along with the Natalie’s Wish Day of Hope event organized by Jeff and Nancy Stack.

A parent of two young boys living with Cystinosis compiled notes from the most recent Cystinosis conference: Day of Hope with the Cystinosis Research Foundation. Follow the link here to read Stephen Jenkins summation of the most current Cystinosis information.

Image of a young woman holding up a book that reads: I just want to live a life worth writing down.

Adults living with rare disease need to be heard and validated no matter what resources they use or don’t use; what skills and abilities they have and don’t have. Their lives are not for sale based on the level of inspiration they elicit from audiences. It’s not for others that adults should share their stories, but for their own existence.

Author: Debby Downer

I am an adult woman living with the rare disease Cystinosis. I am a writer, blogger, performance artist, and rare disease advocate who wants to promote awareness and encourage other adult voices living with rare disease.

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