Advances in the Diagnosis and Management of Rare Disorders - Episode 6

Education Sources for Lipodystrophy Patients

The panelists discuss where patients, their families, and in some cases their physicians can learn more about lipodystrophy to help in their own treatment process.

Vanessa Rangell Miller, MS, CGC, MBA, says that while the condition may not be common there are plenty of places people can turn to in order to learn more about it.

“There’s resources available through NORD, National Organizations of Rare Disease, and, again, educational components that can be used for healthcare providers as well,” she says.

Miller also points to advocacy groups like Lipodystrophy United that can be an invaluable resource to people on a daily basis.

While lipodystrophy disproportionately affects women, Miller says it is important to remember that it can affect both men and women.

“I would encourage the fact that even though we are seeing a high proportion of women diagnosed, we’re seeing a great proportion of males who are underdiagnosed right now in the community and to raise that awareness,” she says.

Lipodystrophy United is creating a registry of patients from around the world who will be able to contact and support each other in a variety of ways. Miller says a similar group is being formed for

chylomicronemia.

Elaine Cochran, MSN, CRNP, says patients can also turn to non-medical sources like Facebook for support and information in a variety of forms.

“There’s a couple of groups on Facebook where the Lipodystrophy patients have come together, and I think even with the international patients, it seems to provide a nice forum where they can read the blog and then they can sort of individually ask certain people questions,” she says.