Hello Kate,
My grandaughters rhumatologist is getting in contact with Janet
Jones and then she (the doctor) will notify our daughter. We all have so
much to learn yet about all of this. I am afarid that I am not quite
comprehending the difference between Nomids and Muckle Wells. It is all
so strange to us. If they suspect Muckle Wells will she not be able to
go to NIH? We are so looking forward to our Erika to be treated
properly. It seems that the steroid is just not working. And she has
scar tissue now from all the spinal taps. ~Jacie~

Jacie, Have you phoned Janet Jones to make an appointment. the reason I ask
this is because the NIH are not able to contact you .You have to ask if your
child can come to be tested.
With regards to the Muckle-Wells and NOMID syndromes I was told that those
families where the mutation has gone from one generation to another that
this is more likely to be Muckle-Wells than NOMID. And that this mutation
occurs accidently in NOMID and that it is not classed as auto-somal. Muckle-
Wells is!

The Children's Inn is a wonderful place infact I only got to see it the
night before we flew home but I would have loved to stay there the week. The
staff are wonderful and because most if not all are volunteers they really
make you feel wanted.The children are treated like kings and Queens.

Hope all is going well with your little angels. Love
Katexxxxxxxxxxxxxxxxxxxxx




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