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?
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 email@example.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.
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.