Welcome Patients/Families/Caregivers/Physicians of Niemann Pick Type-C. This webpage was designed to be a resource for all those affected by NPC disease, that consolidates actual experiences and conversations from patients and their families into one place. We hope you find this site helpful as you navigate your journey in NPC, and if you have anything to add please let us know!
Question: are there any NPC patients that were able to keep & use their Omaya reservoir longterm? J’s had to be removed a month after it was put in because of infection back in 2013. Now one of her doctors wants us to consider putting another one in so she can get cyclodextrin again without…Read More
Question: Has anyone’s child experience fatigue for over a month out from getting their 2nd Pfizer shot? Responses from the community: *JJP Not here. At least not noticed. *RM Yes. S has experienced extreme fatigue. Two rounds of blood work and urinalysis but with nothing showing up. It’s been over three months. Dr is testing…Read More
Question: Curious as to what brand of covid shot other NPC kids received ? Please tell me the good and bad you have seen. Thinking about getting it done for K. Responses from the community: * SC My grandson got the Moderna with no side effects. * MB My son Moderna. flu like symptoms for…Read More
Question: Does anyone have a problem with mucus pooling in the throat. C is experiencing really thick mucus and even though he is on glycopyrronium injections to dry up secretions, it doesn’t seem to be working. This is causing him to choke really badly. He is on a modified diet and thickened fluids but is…Read More