MPS Results are Back.

[ericaj]

Hi all,

I am sad to even write good news for all the sadness about little Bethy. As hard as it seems we must remember she is in a better place.

I got my own results today from hte Genetics Counselor about the mucopolysaccharidoses tests and it appears I do in fact have this metabolic disease. A mild form which means essentially it has affected me only from the neck down. - Lungs, heart, jopints, carpal tunnel, etc.

I meet with the Genetics team next week to go over everything and to make a plan for management. There is a Enzyme replacement treatment though which I will also get more info on.

I'll keep everyone updated as I learn more.

Erica

 

[fyrfytr]

Hey Erica,
I am glad to hear they have figured some things out for you and I hope they can get it taken care of.
Take Care

 

[Ross]

Insurance?

 

[Karlynn]

Erica, I'm glad to hear that you are getting some answers. Thank you for sharing your good news.

 

[ericaj]

Yes Ross I have Insurance.

Thank you Dave for your kind thoughts.

Karlynn - it is good news and bad news all in one!!

I guess it is all the uncertainty with mps that scares me most.

Erica

 

[Abbanabba]

Well now you've been getting some definite answers at least they can get a treatment plan sorted out for you. It may not "cure" things, but hopefully it makes life far more manageable for you.

Good luck with everything...

Anna : )