Genetic disorder in your family? How to handle disclosure, etc?

[Anonymous]

I will be undergoing genetic testing for a suspected genetic disorder that I have all the signs of. It's statistically pretty likely I have the mutation based on initial testing and symptoms. Reading about it it's also likely I inherited it from my mother. If I have the mutation I have a higher risk of a particular cancer (not breast) and I hope that my insurance will cover yearly screening.

I admit I didn't really think through all the implications for having a genetic disorder "on your record" and even if I did I'd probably have gone forward with genetic testing as the cancer risk increases as you age. I'm very lucky to have good insurance through my employer and with government service I will be able to carry it into retirement.

My concerns/questions are: 1) if you had something like this in your family how did you tell them? My family is pretty low drama so I'm not hugely worried, but my parents should know as should my brother for his own sake and b/c he has two children. He is the type that will definitely be vigilant so I wouldn't tell his wife directly, but wouldn't hide it.

2) for your own kids, would you seek to have them genetically tested under the age of 18? It's highly unlikely they will develop symptoms while they are young and even more unlikely that they would be at higher risk for the cancer mentioned above until they were older. This is definitely the type of thing that could have been an issue prior to the ACA protection for pre-existing conditions, and is still something that could be an issue in getting life insurance.

This isn't me just spitballing or freaking out. It's listed as something to keep in mind if you decide to have your children tested on the website for the organization dedicated to the disorder.

I am probably getting a little ahead of myself, but it all kind of hit home as I'm working with insurance to set up genetic counseling.

[Anonymous]

In a similar situation.

I told my siblings and nieces/nephews straightaway. As for my kid: I was advised to wait until he was 18 to have him tested for the genetic disorder.

[Anonymous]

What genetic disorder?

Keep in mind people are VERY weird about testing. Many people choose to not know and it's their right.

[Anonymous]

I’d pay out of pocket under a different name. The ACA could be repealed.

[Anonymous]

I told my half brother about him having a 50% chance of having this mutation. He does not want to get tested, he is 39, and I am 50. I did not tell my daughter. She is too impresionable.

[Anonymous]

Anonymous wrote:I’d pay out of pocket under a different name. The ACA could be repealed.

OP here. Cat's out of the bag with my insurance. Unintended consequence of the initial testing - biopsy of a skin lesion that I thought could be skin cancer.

Since this is anonymous and someone asked, the condition is Hereditary Leiomyomatosis. Presents as skin lesions that come back positive for leiomyoma when biopsied. Also fibroids of a certain type - fibroids are relatively common so if you have a fibroid don't freak out. It's very unlikely you have this.

My mother and I both had pretty serious fibroid issues - she had a hysterectomy in the '80's - major surgery for her. I got luckier and had a uterine artery embolization.

[Anonymous]

Having been through this with not being able to get life insurance because my health record simply mentioned that I was thinking about getting genetic testing, I would be cautious about testing your children before they were of an age where the information would be useful.

For example, BRCA testing doesn’t need to be done on someone under 18. It would be a needless burden to do it for a child. I don’t know what your concern is, but I would think strategically about any testing that you do.

[Anonymous]

Anonymous wrote:Having been through this with not being able to get life insurance because my health record simply mentioned that I was thinking about getting genetic testing, I would be cautious about testing your children before they were of an age where the information would be useful.

For example, BRCA testing doesn’t need to be done on someone under 18. It would be a needless burden to do it for a child. I don’t know what your concern is, but I would think strategically about any testing that you do.

Thanks. The issue here is increased risk of renal cancer, and specifically a very aggressive type. I have some time before I have to cross the bridge on whether to test them. Probably lots more research in the future.

I am glad to hear from others with similar issues.

[Anonymous]

I’m at risk of Huntingtons. Not getting tested since there’s no cure. I did find a whole life policy that didn’t specifically ask about Huntington’s. I also have term life. I have two young kids. Not telling them yet. I have my reasons for not getting tested but if a cure emerges I will get tested and seen treatment.

[Anonymous]

My mom is BRCA+. She told my brother and me as soon as she found out. I immediately got tested and am negative. My brother is not great about following through on certain things or going to medical appointments and has dragged his feet (it's been almost 13 years). Now that he has a child and has secured a hefty life insurance policy, I expect he'll get tested. My mom's sisters and cousins were very upset when she suggested they get tested. One of my aunts did eventually get tested after finding a suspicious lump that turned out to be benign, but only because her doctor basically insisted. She was negative. Two of my second cousins also got tested and are positive-- one actually has breast cancer currently and her sister got a prophylactic mastectomy after getting the BRCA result. Their children are all negative. At this point, my moms siblings and first cousins are all in their 70s and I guess they figure it's not worth finding out because they wouldn't go through chemo, etc.

[Anonymous]

Anonymous wrote:I’d pay out of pocket under a different name. The ACA could be repealed.

This, and if you want to get life insurance forget it. Don’t use your real name.

[Anonymous]

I have a genetic disease that is inherited maternally with variable presentation from none to mild to very bad. I'm in the middle. I told my mother and brothers when I was diagnosed. My brothers weren't interested. My mother was interested but hasn't been able to do much with the information.

My children have also been tested, which I was very ambivalent about. I don't know what effect it will have on their future. They're both boys so at least they'll never have to make any decisions about reproduction.

However, I have found that genetic diseases are not well understood. When I purchased term life insurance, they didn't even ask. When I told my doctor and the pediatrician, they didn't know what to do with the information. Only my nephrologist has actually used the diagnosis.

[Anonymous]

Goodness you are so naïve about health insurance and life insurance. Do not get tested! Especially your children!!

[Anonymous]

Make an appointment with a genetic counselor.

[Anonymous]

Anonymous wrote:Goodness you are so naïve about health insurance and life insurance. Do not get tested! Especially your children!!

20:20 here. I purchased life insurance before the appointment with the geneticist but, it turned out, the life insurance never asked.

For my kids, I didn't expect that they would be tested but when the time came, I didn't refuse. They both have mild symptoms and have been helped by supplements.