UCD in Common
When Lupe found out that her daughter had this medical condition she researched online and found a support group with people that were experiencing the same thing as Isabel. She chatted with two ladies in a support group on Facebook and when she found out that they were going to be in Chicago, close to her home, she decided that she needed to meet them. Lupe knew that she had to meet these women because they’re adults that have the exact same condition as her daughter. When Isabel was first diagnosed, she didn’t understand the disease very well, “but speaking with other families that had it for a while kind of helped me understand it better,” she says.
The ladies were involved in sharing their story on UCD in Common, which is a website that recently launched, and is a useful website that provides support, educational materials, and recipes for people who have this type of disorder. When they found out that she was a caregiver, they invited Lupe to share her daughter’s story to advocate for others that are going through the same thing.
“The most difficult thing about this disease is feeling helpless because no matter what you do, sometimes this condition creeps up on you, but if you keep informed and you have a good support system, then you will be o.k.,” says Lupe.
To learn more about Isabel and Lupe’s journey with UCD, check out this video:
