Hurler Syndrome MPS 1

Nurses General Nursing

Published

Specializes in Special needs child.

Hi Everyone :)

I am new to the group and I am glad I found this group. I am hoping I can talk to you guys about somethings.

I have a daughter that has hurler syndrome. She had a bone marrow transplant when she was one.Hurler syndrome, also known as mucopolysaccharidosis type I (MPS I), Hurler's disease or gargoylism, is a genetic disorder that results in the buildup of mucopolysaccharides due to a deficiency of alpha-L iduronidase, an enzyme responsible for the degradation of mucopolysaccharides in lysosomes. Without this enzyme, a buildup of heparan sulfate and dermatan sulfate occurs in the body. Symptoms appear during childhood and early death can occur due to organ damage.

To make a long story short, taking care of Sydney has made becoming a nurse a passion.

I am in school taking my prereqs, but school has not come easy. I have been out of school for 10 years. I read a lot about what you all are going through with school and I have to take a deep discouraging breath. Yes, this is what I truly want to do!!

I get discouraged because I hear how hard it is to get in to the program and if you don't get A's and B's you can forget about it.

Any words of encouragement?

Thanks!!

First of all your daughter is in my prayers. I have never heard of this Hurler Syndrome MPS 1 so I appreciate your explanation.

Secondly, yes it is very challenging to get through it; however, it is also very doable. Just focus on one course at a time. Don't get overwhelmed by worrying about getting in or any other thing that may cause stress. Just do the best you can do with what you been charged to learn. You can do this!!!

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