I may be reiterating this, but it is crucial to understanding the background of an adult living with a rare disease not fitting into the organizations already out there designed to support children and teens living with cystinosis as caregivers and parents see fit.
The thing I may be reiterating is that I did not grow up surrounded by families with children who also had my disease and their non-cystinosis siblings for my family to communicate with and vice versa.
My mother received regular phone calls from Jean Hobbs-Hotz of the original Cystinosis Foundation, and once we had a pediatric nephrologist who saw me after diagnosis cystinosis at age 5, that was it for outside help.
I wasn’t contacted by any Cystinosis Research Network or Cystinosis Research Foundation. In 2011, Jennifer Caughlin of Caughlin Research invited my mother and I to a townhall. Even at that time, my mother felt like she was no longer a fit in the community as a parent of an adult with cystinosis.
It took me a bit longer for my displacement to sink in but my outsider lense became apparent as soon as I felt the USA organizations were interested in me and my skills as a token to promote within their established leadership, and not an adult who has lived experience with cystinosis, is a subject matter expert on SSI and disability needs, and is also a trained speaker and writer.
I thought about sanding down my edges to be the puzzle piece that fit inside their youth group type adult groups–both inside of Future by Design and in applying for Adult Leadership Advisory Group. I didn’t want any conflict of interest in my advocacy outreach to different rare disease adult groups so I opted to continue studying my communication profession from a far rather than within the parent organizations.
Because I am not some adult who has aged-out of the youth group, I am a privileged adult woman who is college-educated (yes, it is through my white, and then middle-class privilege that I am in institutions of higher education, not my merit) and possessed of leadership skills in speaking and writing on certain subjects and topics, I have embraced a controversial existence.
I have almost 33 years of lived experience which include the microaggressions and out-right abuses from institutions for being disabled, female, and queer. Yes, it was at a CRN conference in 2017 where I was uplifted because an editor from Patientworthy noted my professional value and human worth beyond medicine that I started writing regularly for that rare news website.
It was Horizon who noticed I would speak with honesty and truthfulness about what needs in the adult community are being either blatantly ignored or being re-packaged as work the adults do in support for the teens and children or just being re-narrated under the umbrella of comfortable rhetoric to assuage caregivers and parents.
With Patientworthy and Horizon asking questions and introducing me to a wider audience within rare, I wanted to do more for the adult community than just offer tokenism or patronizing support in the form of segregated groups when simply giving board positions to those adults with cystinosis qualified to lead would have answered adult pleas for resources and help from the established organizations. Keeping adults with cystinosis in previous positions and listening to their suggestions by leading with their recommendations would have acknowledged the dignity of older adults living with cystinosis, I would be remiss not to mention here.
When my friend Mika Covington messaged me to ask about joining her effort to start an organization that would be led by adults with cystinosis for adults with cystinosis, I said yes to informing the community about adult needs and educating the public about the existence and persistance of adults living with cystinosis.
It is so important that those of us adults living rare are visible and leading our own narrative instead of sifting it through able-bodied caregiver and parent lenses. Why? Because those who care most for us, do not necessarily live the daily stress of life along with a rare disease.
They don’t date with the thought of when do I reveal my condition to a potential partner. They don’t work with worries about bosses and coworkers inquiring about the smell of our treatment in our bodies, and if or when we should let jobs know about outcomes scheduled medical appointments or emergency visits have on our health. They don’t apply to secondary education keeping communication open with professors and teachers. They don’t worry about keeping compliant on medications when state insurance is our only option in certain times of our lives and many times we don’t have a good option for paying for drugs with our employer’s plan.
They don’t worry about living with other conditions besides cystinosis. Many of us in the cystinosis community are also the 1 out of 5 with mental conditions. Many of our stories also include other traumas like sexual abuse, domestic violence and neglect, and living below poverty levels. Some of our stories depend on background, race, ethnicity, culture, gender, faith, and sexuality and how living with cystinosis shapes those aspects as well.
We need something we have created ourselves. Not something caregiver and parent approved as we are the parent and caregiver, some of us of more than just our own lives but of biological and adopted offspring and spouses/partners.
I am incredibly proud of certain peers of mine making things happen on their own. Those who have started groups under the organizations only to see it disappear: you did something no one else as done before and you were the inspiration for the current group assisting CRN.
Please. Reach out to Next Generation of Cystinosis if you are an adult living with cystinosis and be a part of history as this is a group of adults living with cystinosis using their skills to create and lead our own narrative in the community and the world.
We do consider people who are non-cystinosis as advisors, but our bylaws state our group will always be at least 60% run by those living with cystinosis in their bodies. We recognize ally support is essential, especially as they listen and ask questions for our improvement.
If you are in need of inclusive community, I hope you find that space where you can grow be it with us or in the adult and teen community groups or your own inspiration of creation.