This Rare Disease Day, We’re Grateful for Those Who Came Before Us

It is humbling to know that we are the beneficiaries of those who have gone before us.

We stand on the shoulders of those who worked hard for us to benefit from their efforts and discoveries.

We need not look further than the name of the disease that touches this community — Lambert-Eaton myasthenic syndrome (LEMS) — to know that we follow behind Dr. Edward Lambert and Dr. Lee Eaton, the pioneers who discovered LEMS back in the 1950s and ’60s.

With that discovery came treatment, medication, knowledge, and awareness.

The power of awareness is an amazing thing. I feel a great amount of thankfulness as we approach Rare Disease Day on Feb. 28. I am so grateful such a day exists.

It is a perfect opportunity to highlight rare diseases and bring to light many hidden struggles.

It is a time to spread awareness, bring compassion to communities of people who frequently feel overlooked or marginalized, and demand action!

Our daughter Grace is the rarest of the rare. Not only does she have LEMS, which is considered a rare disease with only 2.8 cases per million people in the world, but she also is a pediatric patient with LEMS. There are only 11 documented cases of pediatric LEMS in scientific literature.

We have found that having a rare disease has given Grace a unique opportunity to use her voice for shedding light on the rare communities, specifically LEMS.

Finding her voice
We are taking this opportunity to teach Grace to advocate for herself and others fighting the same fight. Having a rare disease has given Grace a voice and a platform to explain the struggles she and others like her face.

Educating her classmates
We encourage Grace to educate those around her regarding LEMS and rare disease. She has been able to do this in conversations and through research papers presented in school, which help to educate her classmates and teachers.

Collaborating with her doctor
Grace has an opportunity to collaborate with her doctor to document her case and provide it as a case study for other doctors and patients. While there are only 11 documented pediatric LEMS cases, we are fully aware that more exist. Grace is doing her small part to add to the information documented so that others can understand how LEMS affects children.

Growing community
The LEMS community, which includes Facebook groups and the Lambert-Eaton News Forums, has been a wonderful way to educate ourselves about the illness and to connect with others living with LEMS. These communities have been a lifeline for our family. Knowing that we’re not alone in this fight is invaluable. Together we are indeed stronger.

We encourage Grace to be confident in knowing she is here for such a time as this. Her life — and yours — matter. Her voice — and yours — matter. These small efforts to spread awareness are valuable, and combined with the larger community of rare disease, make a difference for future generations.

May those who come after us benefit from our efforts to bring awareness, broaden research, and pour out compassion on the rare community.