Does NPC always affect a person's speech by age 29?

Question

Hello doctor,

My brother is 29 years old and has Niemann-Pick disease type C. We worry that he will eventually lose his ability to speak.

We have read a lot online, but I do not know if that applies to everyone. Some stories make it sound like speech problems are inevitable by age 30, which has us quite scared.

Does Niemann-Pick disease type C always affect speech that severely, or can the course of the disease vary significantly from person to person?

We would really appreciate some perspective from people familiar with this condition.

Please help.

Thank you.

Answer 1

Hi,

Thank you for logging onto icliniq.com.

I have read your query and understood your concern.

Niemann-Pick disease type C (NPC) can affect the speaking ability gradually, but it should be noted that this disease varies greatly in each patient, and there is no guarantee that every NPC patient will become speechless at the age of 30.

In some cases, there may be gradually developing difficulty in speech, including slurred speech and/or problems with articulation, while in other patients, the speaking ability can remain normal for many years. The age of disease onset, the speed of development, genetic factors, and treatment options can play a role in the development of the disease.

Thus, personal experiences described on the Internet cannot predict what will happen to your brother.

Regular follow-up with his neurologist and speech and language therapist can help monitor any changes and introduce strategies to preserve communication for as long as possible.

While it is understandable to worry about the future, no one can accurately predict from age alone whether or when severe speech impairment will occur, and many people with NPC follow a different course than what is described in the most alarming accounts online.

I hope I have answered your question.

Let me know if I can assist you further.

Thank you.