Short but Fierce Vent

I have tried a few times to alert my sister to the genetic issues of Ulcerative Colitis. I'm the first one in my family to have it, but I'm also the first one in my family to have breast cancer, and since my sister's daughter looks like my clone, I have a feeling that she and I share some other genetic traits and, heavens to murgatroyd, come ON, it's your DAUGHTER, pay attention when I tell you to alert her doctors to something.

So no, she didn't alert her daughter's doctors to the issues and she just sent me an email, all innocent and wide-eyed, saying that they had no idea what was wrong with little Sophie (she's 10) for months and months, and it turns out she has Celiac Disease.

I responded, asking whether Sophie's doctors had been informed that her aunt has UC.

Radio silence.

It's one thing to just ignore your sister's illness. That's fine with me. I played both down. But to do so to the detriment of your daughter?

Just think how much more quickly they would have thought of Celiac Disease if they'd known that there's an autoimmune tendency in the family.

Meh. She thinks she's such a great mother. Whatever.

It's denial at work, not wanting it to happen so deny-deny.
Now that she has been diagnosed with Celiac perhaps your sister will open some communication with you.

Sounds like my cousin who believes tanning is a great way to look better, even though I'm on imuran. Clearly the tanning and hair dye went straight to her head.

I'm sorry that your sister won't listen.

how is celiac disease preventable?

q

It wouldn't have changed the outcome, however...but it would have eased your niece's suffering much earlier.

People are in denial for long times, especially with their children, and what parent wants to be "responsible" for passing along genes that cause their children pain?

She obviously did have her checked or she wouldn't have had the diagnosis. There's still time for her to share the autoimmune connection.

Try to still be supportive...or she'll never ask for suggestions.

Maybe there are some support sites for children's celiac you might send her way...soon your niece will be old enough to be doing research on her own. In the meantime, ask your sister if you can ask your niece if she has any questions that you can find the answers for her.

q

Thanks, Quincy. I actually learned many years ago that it's never productive to let my sister know what I'm feeling. We're trading calls right now, and I will see if I can provide any assistance, but I also know that whatever my sister is doing, whatever doctor she sees, or profession she has, or school she goes to, is always, without fail, "the best in the nation and perhaps the world". Sophie will soon be old enough to hear other points of view and hopefully I'll be able to provide another perspective on life. *sigh* Families....

It seems common for family members go into denial mode when discussing UC/CD because even in the light of indisputable evidence, no one wants to admit that they carry the faulty genes.
There have been many studies that show that UC/CD are usually carried by the female side of a family making daughters and their children especially susceptible to these diseases. This is science, not assigning blame.
I certainly don't blame my mother for her genes, but it would be nice if family members would not blame me for "giving myself" UC by bad thoughts and other voodoo.
This is a tough subject no doubt, but denial is probably the worst way of handling these issues.