Patient Stories

My name is Chelsea. I am from Taos , New Mexico. I was diagnosed with a rare disease in 2015.

I immediately felt a need to seek support within a small group of people who had the same rare disease has me. I eventually met my husband who has the same rare disease and we are able to support each other with hardship of rare disease.

I believe it is important  to New Mexico to have a rare disease council to continue to raise awareness for all rare diseases in the state.

My name is David and I was diagnosed with my rare disease in 2017 . I got involved with supporting my rare community with running patient  groups and a clinical trial at Boston Childrens Hospital.

In 2020 I set up a men’s support group online for male patients and caregivers impacted by rare diseases around the world as I felt this was an unmet need .

I met my now wife Chelsea, ( who has the same condition), at rare disease conference in San Diego . 

I feel having a state council in New Mexico is really important because it is a bit like my mens group which is something that needs focus on. I also believe all voices should be heard and no one should be unsupported with a rare / chronic health condition ! 

I’m Mo and over 20 years ago I was hit from behind by a dump truck on the freeway. Multiple complications arose from the accident, went to numerous specialists and endured countless tests all with no diagnosis for almost a year.

A simple genetic test would have highlighted the disease without negatively impacting my quality of life, unlike all the numerous invasive interventions offered but it wasn’t an option back then.

Once diagnosed with my rare disease, I joined different associations, attended local meetings and sought out as much information about my rare disease as possible while spreading awareness about its rarity and trying to help others.