June 17 2025

This is the coolest, most useful tool! Thank you to The Chromosome 18 Research Center at UT Health San Antonio. I’ve been on a 2 year journey so far in trying to achieve a better quality of life for Lillian. Her quality of life has tanked to non-existent over the past few years.

(2014 photo of Lillian)

FINALLY getting to some answers and this gene mapping tool (for those of us enrolled in the C18 study) is incredibly valuable. It is a full time job keeping track of test results and staying on top of doctors and specialists to review results, and get referrals. Then referrals are denied. More phone calls, more work.

Recently, Lillian’s general practitioner referred Lillian to a hematologist for an iron infusion and to investigate why she’s anemic. They rejected it, indicating to try oral iron first. People. We are not idiots. Do they not think people would try the easiest option before the one that’ll be a headache and more work. Hematologist office wouldn’t talk to me about it. So I filed a complaint with Renown (did you know you could do that – you can!). Don’t take no for an answer when you know that you are correct.

I got a call today and they are going to have it reviewed again once the GP sends another referral indicating she has already tried the oral (she couldn’t tolerate it) and that she’s got a rare genetic condition and the anemia needs to be investigated further. GP will refer for iron infusion so we don’t have to wait.

Incidentally, they also denied my referral as I need my iron levels monitored so I don’t spiral down like has happened two times now. I also filed a complaint for myself and that’s being sent back with additional information. My dudes, I just need monitored.

All of this is so much damn work. I’m trying to get as much done as possible before fall semester begins. Hadn’t planned on sharing all of that. But, it feels good to share it!