Rare Disease Impact Report quantifies patient and caregiver challenges on journey to diagnosis and beyond
(BPT) - Getting a diagnosis is just the first of many challenges patients with rare diseases – and their caregivers – face.
“We went through a number of specialists until we found a team that finally looked at my daughter, Hannah, as a patient with unique needs,” says Carrie Ostrea of Las Vegas, Nev. “The process was filled with huge financial challenges. My husband was laid off from his job of five years and we had to continue to pay for insurance just so Hannah could continue getting treatments. The isolation was also incredibly difficult. Some of our family even stayed away from us because they couldn't handle the situation of us having a child with a rare illness.”
Hannah Ostrea was diagnosed with Gaucher Disease type 2/3, a fatal rare genetic disorder characterized by brainstem dysfunction, loss of primitive functions such as breathing and swallowing, low blood platelets, and enlargement of the liver and spleen. She passed away at age three.
If you have any technical difficulties, either with your username and password or with the payment options, please contact us by e-mail at firstname.lastname@example.org