CHOP researcher responded to my email

I’m very touched he’s still thinking of me…we’re still waiting to hear back with the lab results to see if my father has the mutation, but either way I’m very grateful they’re working on it…

Begin forwarded message:

From: Teddy
Date: December 5, 2012 9:16:53 AM PST
To: RG
Subject: Re: Strange rash on my left arm

Thanks Ryan–I really appreciate this–I’m looking forward to the results–

I really think there’s something else going on along with NEMO…but of course I could be wrong 🙂 I’m going to talk with my immunologist here in Los Angeles, Dr. Kachru, today about submitting me to my insurance for IVIG with the NEMO diagnosis. I may need a letter explaining how IVIG helps people with rare immune deficiencies, like NEMO, even when there isn’t an established ‘standard of care’, because there are so few cases…stuff they already know, but…

Did my mother ever send you a blood sample? My half sister from my mother keeps complaining of weird health problems (like mono). As rare as rare as this may be, I think there’s a small chance I got NEMO from my mother and something else from my father…

Small Canadian farming communities…there’s definitely some bad genes floating around there. Maybe thats partly why there are so many MS cases? They speculate its from lack of sun, but I think it might just be some bad gene pools…

Tara

On Dec 5, 2012, at 8:42 AM, Ryan Golhar <golharr> wrote:

Hi Tara – Its possible. I’m still convinced its the NEMO mutation, which I’m (patiently) waiting for the test results to come back, which should be in the next day or two.

Ryan

On Wed, Dec 5, 2012 at 11:13 AM, Teddy wrote:

I just woke up (from another very rough night of sleep), and I found this red rash on my left arm.

I get strange rashes like this from time to time. Usually, they’re mostly infection based, like a staph infection and goes away with some bactorban.

Maybe this is from using the sauna?

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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