RE: CF

January 2, 2001

Wow...700 CF mutations...that is alot more then what we were told. Ursula

how come you are in a CF group? My Aunt has been looking for a CF support

group Online for a while now....could you please let me know how she could

join? Her daughter is quite ill and is now on a double lung transplant list,

she could really use a good support system from those who have been through

this. Thanks. Hope all is well.

Autumn (Mom to Mark Cd5-Cd19 PID and )

January 2, 2001

go to www.cystic-l.org there is a wonderful man named Ron Trueworthy who

runs the group. As I said before there was a wide belief by Macey's GI and

Lung doctor that she did have CF in the beginning. So treatments and

medicines were similar. Before I found Barb's SCID group there was little

information by other parents about PICC lines, neb treatments, CPT, IVIG and

other GI issues. Every time I did a search on the web for such I came up

with an archived post from the cystic-l list.

So I joined. it started out with alot of evening chats over MIRC that

helped calm my fears. Plus they had dealt with ports an staph infections

and then when the pseudomonas infection happened they knew all about the

repercussions. They're a wonderful group and I think your Aunt would be

gaining alot by checking out the web site and possibly joining the group.

Also she might check out the Second Wind site that Rayni mentions on the

SCID list. Many cystic-l members are post or pre transplant and belong to

that list also.

Good luck.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

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