My name is Melody Olander and I have had a rare disease since I was 17 years old. I am now 24 years old, and I have been diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Postural orthostatic tachycardia syndrome (POTS), and Ehlers Danlos Syndrome (EDS).
After publishing my book, "But You Don't Look Sick." I decided to dedicate my time towards connecting the chronically ill community. A new diagnoses can be a scary journey, and it can make you feel alone. I want to create a site that gives the chronically ill access to everything in one location.
Since starting BYDLS in October 2019, our community has grown to over 34,000 members and continues to grow every day.
Our site has allowed members to share their stories through blog posts. We've added a page full of helpful sites such as, apparel, nutrition, financial, support groups, virtual activities to participate in. We connect community members to members with the same conditions through group messages. We provide research, information for both caretakers and patients, and videos/podcasts sharing stories in the community. We actively work to connect community members with their needs to better manage their condition. "But You Don't Look Sick." works to facilitate the organic growth of resource networks for chronically ill people in the community by optimizing meaningful connections and building relationships in the community.
After seeing how much of a difference BYDLS has made for the chronic illness community, we wantedto take it to the next step to be able to help others more. We have started the process of turning into a non-profit, but this is where we need your help.
Becoming a non-profit allows us to raise money for others, donate, and have events for "But You Don't Look Sick." It would allow us to fulfill our dream of raising money for those who can't afford their doctors bills/treatments. It creates more opportunity to help as many people as we can, but with this opportunity also comes costs , and we can't do it alone.
The list of fees and steps to become a non-profit is long including a filing fee, state fees, tax exemption fees, certificates, lawyer fees and the time that it takes.
We've started the process, but we can't do it alone.
If you can help or share our story we would greatly appreciate it.
With your help we will be able to help others more.
You can follow us at
- Robert Olander
- Díana Gorbea
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