How Bonnie Jackson Made Her Way Into the Community of ‘Behind The Mystery’

In the United States, diseases that affect less than 200,000 people are classified as “rare.” However, like anything else, when something is put in that category, it generally gets less attention and less awareness.

There are over 7,000 rare diseases, and they affect 300-million people worldwide. Behind The Mystery is a segment on The Balancing Act that invites experts on this topic to spread awareness about certain conditions and stories surrounding the lives of those who are living with rare diseases all over the United States. For the last ten years, Behind The Mystery has covered over one hundred rare diseases, and over time, an online community has formed around families who have loved ones living with a disorder that has been, in some way, swept under the rug. This community allows these families to share experiences, difficulties, and little and big victories with one another. Within each other, they’ve found an extra layer of support, and most importantly, offer hope future families who may undergo similar experiences. Let‘s take Bonnie Jackson, for instance. She’s part of this community.

Bonnie Jackson came across the Behind The Mystery community after her daughter Mia was diagnosed with Vascular Ehlers Danlos Syndrome (VEDS).

VEDS is a disease caused by a mutation in the COL3A1 gene, which affects the collagen in the arteries, organs, vascular system, making them extremely high risk to tear or rupture. It is a life threatening and a life limiting condition. Dealing with the mental and physical aspects of the disease on a daily basis are very challenging for both the diagnosed and those that care and love someone with the disease.

Bonnie tells Behind The Mystery that she has changed from a little kitten to a lioness since Mia has been diagnosed. Because VEDS is invisible at first, many professionals didn’t really dig deeper. This is a pattern we consistently see in the rare disease community, and is extremely frustrating especially for families whose loved one’s symptoms are worsening and don’t get the proper treatment. This leaves people feeling defeated and hopeless at times.

Bonnie’s journey with Mia’s VEDS has been exhausting to say the least, and she says from the start, that her instincts as a mother knew that something was seriously wrong. It was Mia’s fragility and waves of symptoms that led Bonnie to the conclusion that what they were dealing with was not “normal.” She dug deep, advocated for her daughter, and discovered the truth about what they were dealing with —and it was serious.

The world of rare diseases can feel isolating for families, which is why a community is so important to have.

In Bonnie’s eyes, Behind the Mystery is a shining beacon for all rare disease communities. She feels that the world can gain so much from learning about the lives of those living with or caring for someone with a rare genetic disorder, the complexity of caregiving, the strength, and resilience needed for each day. After all, there’s so much value in finding empathy and unwavering bonds within our communities if we seek them.

Bonnie ended by telling us that she has a fire ignited to find a cure for her family, and that Behind the Mystery has provided her with friendship, knowledge, and hope.