I introduce you the family of Juan Carlos, a wonderful person that I met here in Costa Rica.
I had the pleasure of sharing somes times with his family and even celebrating his grandmother’s birthday.
Juan Carlos is a nurse, he lived with José for years who is a doctor. They welcomed me very warmly here and I would like to thank them.
Juan Carlos’ mother, Blanca Nieves, 57 years old, has Huntington’s disease. She has been symptomatic for 7 years now and is unfortunately already in an advanced stage. She can no longer speak or walk, has severe swallowing problems and choreic movements. She is a carrier of 47 CAG and I was surprised at how quickly the disease developed in her. Blanca Nieves has brothers who are mostly also affected by the disease.
What touched me once again in this situation is how the patients are surrounded, helped and supported by all their families. It’s very touching and I have a lot of respect for caregivers because I understand the difficulties they encounter on a daily basis.
Juan Carlos dedicates his time to taking care of others, he works as a nurse and in his spare time takes care of his mother and is an active member of the huntington foundation of Costa Rica. He is a very admirable person who inspires me.
The huntington foundation in Costa Rica is new and was created only two years ago. There are currently 40 families with the disease in Costa Rica. The association specializes in helping families directly and informing them about the disease. It’s difficult for them because they need more support, advices, time and the pandemic has made things even more complicated.
In Costa Rica, few doctors are aware of the disease and it is difficult for patients to be properly oriented. Also to do the genetic test, it is a long and difficult procedure which costs an additional $100 per patient, making it complicated to people at risk from getting tested. It is clear that the foundation is new and needs advices and help in order to progress.
It is very interesting to meet the members of this foundation, patients and families, understand their needs and share our experiences.
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