Huntington's Disease- worth the mention?

[projectpremed]

Hey guys! I have a question that I have been debating for a long time. My mother was diagnosed with Huntington’s disease my junior year of college. It was during my first semester at a 4 year university after transferring from a community college. Between being 1.500 miles from my parents while my mother was being diagnosed and moving to a harder college my grades slipped a bit. It was just a lot to handle at once. (I have a low gpa that I have done a post bad to show an upward trend) I am just curious if y’all think this is worth saying in my app or if I should omit the Huntington’s disease part and just say I didn’t realize how difficult transferring would be and I changed my work ethic and did better from there. I am just scared to put this into an application because Huntington’s disease is genetic and I do not want to be tested for it before I have long term insurance, life insurance, etc. I’m scared it will hurt me more than help me and I wanted y’all’s opinions. I have personally decided that I want to go into medicine no matter if I get Huntington’s or not, but I just don’t know if I should include it on my app. I know the obvious answer seems like no but I thought I would ask y’all’s opinions.

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[DNAJB6]

If you're asking about it from a grade perspective, I would be vague about it and instead of saying it is Huntington's Disease (i.e autosomal dominant disorder) I would describe it as a serious illness without saying it is genetic.

DO NOT get tested before you have disability insurance, life insurance, and both short term and long term disability coverage.

 

[projectpremed]

P.S. As someone with a serious genetic illness, I was advised in PM here by adcoms to not mention it unless absolutely necessary and to be vague if I needed to introduce the topic for some reason FWIW.

Thank you so much for your advice! It really helps!

 

[Goro]

Hey guys! I have a question that I have been debating for a long time. My mother was diagnosed with Huntington’s disease my junior year of college. It was during my first semester at a 4 year university after transferring from a community college. Between being 1.500 miles from my parents while my mother was being diagnosed and moving to a harder college my grades slipped a bit. It was just a lot to handle at once. (I have a low gpa that I have done a post bad to show an upward trend) I am just curious if y’all think this is worth saying in my app or if I should omit the Huntington’s disease part and just say I didn’t realize how difficult transferring would be and I changed my work ethic and did better from there. I am just scared to put this into an application because Huntington’s disease is genetic and I do not want to be tested for it before I have long term insurance, life insurance, etc. I’m scared it will hurt me more than help me and I wanted y’all’s opinions. I have personally decided that I want to go into medicine no matter if I get Huntington’s or not, but I just don’t know if I should include it on my app. I know the obvious answer seems like no but I thought I would ask y’all’s opinions.

Very sorry to hear of this.

It's OK to mention in PS as to why you want to be a doctor, but not for excuses for poor grades.

We cannot discriminate against you for being at risk for Huntington's as this is a violation of the Americans with Disabilities Act. And who knows, you might be the one who helps find a cure for HD

 

[DNAJB6]

We cannot discriminate against you for being at risk for Huntington's as this is a violation of the Americans with Disabilities Act. And who knows, you might be the one who helps find a cure for HD

As a general matter the ADA bars discrimination, but don't schools have technical standards that you must be able to meet? If there is a question of whether you meet those or might not be able to meet those during your medical studies, can't that be used legally as a basis to reject you? And even if people aren't allowed to use that information, I wouldn't rule out unconscious bias or even an intentional nit picking of some other aspect of the application to come to the reviewer's desired disposition.

My knowledge about Huntington's disease is limited, but I'd guess the progression is quite variable making it unclear what the course of illness would look like (at least from a time frame perspective).

 

[Goro]

As long as student is asymptomatic, tech standards are met.

HD symptoms don't start until early 40s, anyway.

 

[M&L]

Maybe unpopular opinion, but i would talk to mom before revealing something so personal. She might not want you to talk about her health with others.

 

[projectpremed]

Very sorry to hear of this.

It's OK to mention in PS as to why you want to be a doctor, but not for excuses for poor grades.

We cannot discriminate against you for being at risk for Huntington's as this is a violation of the Americans with Disabilities Act. And who knows, you might be the one who helps find a cure for HD

Thank you! This makes a lot of sense and helps a lot!

 

[projectpremed]

Maybe unpopular opinion, but i would talk to mom before revealing something so personal. She might not want you to talk about her health with others.

My mom is very open with her diagnosis and very happy to have one 🙂. A lot of people in her family have had it but they never had a name for it. (Were never diagnosed) She always described it as a bunch of people in her family would shake, drop some things, and have races in their wheelchairs. So she knew the symptoms she would have but now thankfully we are able to use medication to lessen the symptoms. My mom and I have had these types of discussions and I would never share something that would have made her uncomfortable or that I thought she wanted to keep private. Thank you for the thought though! 🙂

 

[Tenk]

FYI, you can get your genetic code using 23 and me or other genetic testing sites privately and then input the information on other websites that will tell you if you have Huntington. So long as it’s not through a doctors office or insurance, shouldn’t be traceable. Could also use a throwaway name too.

I agree though that you should get a life insurance/disability policy first before any formal diagnosis, although technically you would be lying on some applications if you don’t report your mother and they somehow find out and revoke your policy. There are different requirements per insurance so in your case you really need to read the actual contract when you do sign.

Sorry about your predicament. Hope that helps.

 

[TelemarketingEnigma]

My mom is very open with her diagnosis and very happy to have one 🙂. A lot of people in her family have had it but they never had a name for it. (Were never diagnosed) She always described it as a bunch of people in her family would shake, drop some things, and have races in their wheelchairs. So she knew the symptoms she would have but now thankfully we are able to use medication to lessen the symptoms. My mom and I have had these types of discussions and I would never share something that would have made her uncomfortable or that I thought she wanted to keep private. Thank you for the thought though! 🙂

This is slightly off topic from your original question, but once you're past the application process I think having your perspective will help make you an better future physician, and if you and your mom are comfortable with it I encourage you to discuss her/your experiences with your future classmates (would be totally understandable if you're not comfortable though!). It's very common in my experience for conditions like HD to be taught almost as one dimensional stereotypes (recognizable on a test, but lacking human depth), so having patient/family perspective is such an important part of humanizing the conditions we learn about during preclinical years. I have a parent with a different neurological disorder and (with her permission) have shared her experiences on several occasions to add depth to conversations about her condition.

 

[DNAJB6]

FYI, you can get your genetic code using 23 and me or other genetic testing sites privately and then input the information on other websites that will tell you if you have Huntington. So long as it’s not through a doctors office or insurance, shouldn’t be traceable. Could also use a throwaway name too.

Sometimes it's better not knowing if you have an incurable disease and continue living your life.

 

[Tenk]

Sometimes it's better not knowing if you have an incurable disease and continue living your life.

Maybe for you. I’d personally want to know and would dedicate my life to finding a cure or treatment. Huntington’s will be one of the first neurological diseases cured with gene therapy. My guess is that the treatments will be more effective the sooner you start but they are in still in their infancy and are literally cutting edge stuff.

Also, I wouldn’t have kids without ivf and chromosome testing in order to only select embryos without the repeat.

Edit: also, what if the test is negative and you could live the rest of your life worry free?

 

[projectpremed]

Maybe for you. I’d personally want to know and would dedicate my life to finding a cure or treatment. Huntington’s will be one of the first neurological diseases cured with gene therapy. My guess is that the treatments will be more effective the sooner you start but they are in still in their infancy and are literally cutting edge stuff.

Also, I wouldn’t have kids without ivf and chromosome testing in order to only select embryos without the repeat.

Edit: also, what if the test is negative and you could live the rest of your life worry free?

I always thought I would want to know until the situation actually applied to me. I plan on getting tested before I have kids but that won’t be for several years. There are just a lot of logistical problems right now. I want good insurance, life insurance, disability insurance and other things set up before I get tested since these things are very hard/expensive to get after being diagnosed with Huntington’s. I have thought long and hard about what if the test is negative and I’ll be able to live my life worry free but there is always the flip side of what if it’s positive and then I have this huge weight on my shoulders for the rest of my life. Or I can just blissfully ignore it for awhile which is what I am doing. As of right now even if I was positive there are not any treatments I would be eligible for. If there were studies that may be able to prevent it I would get tested but that’s just not the scenario now! I totally get what you are saying though!

 

[DNAJB6]

Maybe for you. I’d personally want to know and would dedicate my life to finding a cure or treatment. Huntington’s will be one of the first neurological diseases cured with gene therapy. My guess is that the treatments will be more effective the sooner you start but they are in still in their infancy and are literally cutting edge stuff.

Also, I wouldn’t have kids without ivf and chromosome testing in order to only select embryos without the repeat.

Edit: also, what if the test is negative and you could live the rest of your life worry free?

Scientists have been working on gene therapy since the 1980s and early 1990s. Progress is slow. It could easily be a couple of decades or more before any therapies come to fruition. And what if you do have the disease? A lot of people think they will be fine with it until they are diagnosed with a catastrophic illness. It is a major blow and one often accompanied by depression and despair. Does he really want to be dealing with all of that in medical school and residency? When children come into the mix or if there are therapies available, then that definitely changes the calculus. In the interim, I think he is best to move on with his life and not think about it until he is through this critical phase. As with anything else though, it is a highly personal and subjective decision. Once the decision has been made though, there is no going back.

 

[LunaOri]

Slightly off topic, but:
You probably want to be tested before you have to apply for residency...if you are positive, a specialty with a long training period or one is especially dependent on fine motor coordination might not be practical.

 

[KnightDoc]

I always thought I would want to know until the situation actually applied to me. I plan on getting tested before I have kids but that won’t be for several years. There are just a lot of logistical problems right now. I want good insurance, life insurance, disability insurance and other things set up before I get tested since these things are very hard/expensive to get after being diagnosed with Huntington’s. I have thought long and hard about what if the test is negative and I’ll be able to live my life worry free but there is always the flip side of what if it’s positive and then I have this huge weight on my shoulders for the rest of my life. Or I can just blissfully ignore it for awhile which is what I am doing. As of right now even if I was positive there are not any treatments I would be eligible for. If there were studies that may be able to prevent it I would get tested but that’s just not the scenario now! I totally get what you are saying though!

I really don't think you should let insurance drive your decision. Insurance companies aren't stupid. Something like this that is hereditary and potentially very expensive for them isn't something they aren't able to anticipate or would allow you to game. I can virtually guarantee they will ask you about your family history, and, if you lie, will refuse to pay later claims.

I'm not an insurance agent or anything, so definitely confirm what I am saying, but it just seems too obvious to me that there would be no way you will be able outsmart the insurance industry and be allowed to buy individual policies at the same price as someone who does not have your risk profile, merely by postponing taking a test. I am pretty sure the only reasonably priced insurance you will be able to get will be group insurance through an employer. Assuming I am correct, you can at least eliminate this as a reason not to get tested. I really hope things work out well for you.

 

[LizzyM]

You can be vague so as not to let any unconscious bias creep into the review of your application. Say that your mother had neurological problems that required an extensive work-up and a devastating diagnosis of a degenerative condition for which there is treatment but no cure. It is no one's business what the diagnosis is. She could have ALS, early onset Alzheimer's or any number of other things.... no school should ask you to disclose her diagnosis.

 

[DNAJB6]

I really don't think you should let insurance drive your decision. Insurance companies aren't stupid. Something like this that is hereditary and potentially very expensive for them isn't something they aren't able to anticipate or would allow you to game. I can virtually guarantee they will ask you about your family history, and, if you lie, will refuse to pay later claims.

I'm not an insurance agent or anything, so definitely confirm what I am saying, but it just seems too obvious to me that there would be no way you will be able outsmart the insurance industry and be allowed to buy individual policies at the same price as someone who does not have your risk profile, merely by postponing taking a test. I am pretty sure the only reasonably priced insurance you will be able to get will be group insurance through an employer. Assuming I am correct, you can at least eliminate this as a reason not to get tested. I really hope things work out well for you.

You'd be surprised. State Farm was willing to extend me a disability policy knowing my mother has an autosomal dominant neuromuscular disorder. The agent told me it wasn't a factor and there was no need to mention it. On the other hand, every company will be different. It probably varies by state too.

 

[KnightDoc]

You'd be surprised. State Farm was willing to extend me a disability policy knowing my mother has an autosomal dominant neuromuscular disorder. The agent told me it wasn't a factor and there was no need to mention it. On the other hand, every company will be different. It probably varies by state too.

Excellent point. My point remains, though. If they care, they will ask (about family history, not merely a test that you haven't taken). And if you lie, you run a high risk of being SOL if and when you need the coverage. So there is no reason to allow future potential insurance issues to dictate a course of action.

As you noted, agents are really the best source of information, since they want to sell policies and will do everything possible to get you into one. Hopefully, you don't end up with a bad one who will advise you to commit fraud (without letting you know that you are doing so!) just to make the sale, since any later consequences won't be his problem!

 

[DNAJB6]

As you noted, agents are really the best source of information, since they want to sell policies and will do everything possible to get you into one. Hopefully, you don't end up with a bad one who will advise you to commit fraud (without letting you know that you are doing so!) just to make the sale, since any later consequences won't be his problem!

I thought of that. That's why I solicited a copy of the application. Surprisingly it didn't ask beyond MI, CVA, and the like.

 

[projectpremed]

I really don't think you should let insurance drive your decision. Insurance companies aren't stupid. Something like this that is hereditary and potentially very expensive for them isn't something they aren't able to anticipate or would allow you to game. I can virtually guarantee they will ask you about your family history, and, if you lie, will refuse to pay later claims.

I'm not an insurance agent or anything, so definitely confirm what I am saying, but it just seems too obvious to me that there would be no way you will be able outsmart the insurance industry and be allowed to buy individual policies at the same price as someone who does not have your risk profile, merely by postponing taking a test. I am pretty sure the only reasonably priced insurance you will be able to get will be group insurance through an employer. Assuming I am correct, you can at least eliminate this as a reason not to get tested. I really hope things work out well for you.

Thank you for your concern! I don’t plan on lying but from what I have been told things like long term care insurance, life insurance, and disability insurance are not affected by the hereditary disease until it is an actual diagnosis. There are also other aspects of the situation that have led me to my decision not to get tested yet 🙂

 

[projectpremed]

You can be vague so as not to let any unconscious bias creep into the review of your application. Say that your mother had neurological problems that required an extensive work-up and a devastating diagnosis of a degenerative condition for which there is treatment but no cure. It is no one's business what the diagnosis is. She could have ALS, early onset Alzheimer's or any number of other things.... no school should ask you to disclose her diagnosis.

This is probably what I will do! Thank you so much!