By Makayla Allison
Our 6-year-old daughter, Lily, was recently diagnosed with Ehlers Danlos Hypermobility (EDS-HT). We received this diagnosis only after she acquired more than three dozen symptoms and diagnoses of uncertain significance, ranging from global joint pain and muscle weakness to tinnitus, and over the course of nearly five years.
It was a long and isolating time for our family as we tried to figure out what was going on. We so badly wanted to connect with someone who understood what our little one was going through, and when I asked Lily’s specialists if they could connect us with anyone, the answer was never yes due to privacy laws. Without a diagnosis it is nearly impossible to find groups of people in the same situation to talk to. And it can be even more frightening when the uniqueness of your symptoms isolates you even more.
The discovery of how Lily’s condition affected her hearing was both transparent and innocent. When Lily was 4 years old she asked me if the invisible bumblebees were going to sting her. She was so confused why she couldn’t see the bees that buzzed around her ears. It was shortly after she was referred to an ENT that we learned about tinnitus and that the sounds she hears come from inside her head.
Our daughter had a big desire to find a friend like her, but looking for someone else experiencing the same health challenges online, without posting them in great detail, was proving to be an impossible task. Her dreams inspired us to create Some 1 Like You (S1LY), an organization that connects people privately based on whatever health conditions they are experiencing, regardless of whether or not they’ve received a diagnosis.
According to the documentary film Undiagnosed: Medical Refugees, “The total number of undiagnosed patients is unknown but considered to be vast.... It takes an average of 7.6 years in the U.S. to uncover a rare disease diagnosis. Worldwide there are an estimated 350 million people living with a rare disease; add to [that number] patients still waiting for a diagnosis, patients who have been misdiagnosed, and adults and children who have diseases not yet named or recognized. Being ‘undiagnosed’ is not commonly considered to be an identity, but it should be. Helping people who are ill to feel that others are supporting and advocating for them, and know that they exist, can make all the difference in the world.”
Our mission for S1LY is to privately connect people across symptoms and diagnoses to empower the individuals facing these complex challenges. S1LY is unique because we can perform that search for people, while also keeping their health information private: To make these matches we take only their email address, as well as the health qualities, or groups of qualities they possess and are looking for in someone else.
Once a match is made, the email addresses of those members are shared with each other, and communication is then done only between members. It is our hope that this vast sharing of knowledge and resources among patients will make its way back to physicians and impact treatments as a whole across diseases.
S1LY has developed a Gifted Membership program to cover the lifetime membership fee to Some 1 Like You for constituents of qualifying organizations. 100 gifted memberships have been donated to the Hearing Health Foundation community. The first 100 people to submit their Connect Contact Forms to S1LY with the code “HHF100” will receive lifetime memberships to privately connect with Some 1 Like You members.
If you would like to explore gifted memberships for your patients or members at no cost, please email Makayla at firstname.lastname@example.org. A portion of the proceeds of every S1LY membership goes to funding research on Ehlers Danlos Syndromes.