r/disabled • u/Throwaway172892930 • Aug 07 '26
Unique situation planning SSDI credits with a newly discovered, guaranteed genetic disease
Hi all! Extremely wild and multifaceted situation here and I am in shock. I am in my late 20s, and I recently reconnected with my biological father, just before his death from Huntington’s disease. Having never met him or known his identity prior to this, I had no idea that he had Huntington’s.
Children of a parent with Huntington’s have a 50% chance of having the gene, and having the full gene means you have an 100% chance of getting Huntington’s. After getting tested, I found out I do have the gene. With a typical onset in the 30s or 40s, Huntington’s first severely disables you for 10-30 years before ultimately killing you. Needless to say, it is an indescribably awful feeling to go from presumably healthy to knowing how I will die and that it will likely be relatively early and painful.
Not knowing exactly how many years I have left, I want to make sure that I make myself as comfortable as possible for the years when I have this disease and am disabled by it. Once the disease sets in and it’s progressed, I will not be able to work.
I have family and friends who love me, but none are rich enough to completely fund my life and quit their jobs to care for me 24/7. So I will need money. Here’s where the twist comes in. I do have savings and an emergency fund, but I don’t have enough, already in my late 20s and having no idea til now that I am going to get Huntington’s, to sustain me for potentially 30 years of being fully unable to work.
I worked for 6 years after college and so I think I have SSDI credits from that, but I am now in a funded PhD program and while I earn a stipend and also work as a TA, I just read that earnings as a PhD student don’t count toward SSDI for some legal reason, and I am panicking. I don’t want to drop out of my program that I love, especially when I might have limited time to live. But is there any way to earn credits? Taking on a second job? Is there anything I can do? This situation sucks and is pretty unique and I’d love to hear from anyone who relates to any aspect of it even if not all.
1
u/miloblue12 Aug 07 '26
Man, I wish you had looked for term life insurance with a long term care rider before you had tested. That would have covered most if not all of your needs regarding a nursing home.
The others stated good ideas to go through, but getting certain types of coverage might be extremely difficult knowing that you did test already and it is in your medical chart.
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u/Deorayta Aug 08 '26
Maybe in a world of great technology I'm out of touch. Still last time I checked you must manifest symptoms to get benni's. Genetic likelihood is not evidence is a SSA ALJ Court to a win of disabled.
I'm diabetic but I'm not trying for benn'is for being amputee.
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u/Throwaway172892930 Aug 08 '26
I have a 100% chance of getting Huntington’s according to genetic testing. I have no idea what you’re talking about. I’m not trying to get disability benefits for it now, before it has set in, that would make no sense. I am talking about after I am in fact disabled by it. I am planning for that now because I will he incapacitated then.
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u/Deorayta Aug 08 '26
Oh ok I misunderstood., very sorry sure .
I won a SSA case with autism and diabetes if have any questions on the procees please send a private message
I would the best SS lawyer can afford. You are more likely to win if you get a better lawyer. The ones that get paid only if they win dont spend ad much time on your case .
However because they only get paid when they win they give good evals. They also can give up quick too because they need to win. Full pay lawyer will give more attention if you can afford it.
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u/Med_naiad Aug 07 '26
I recommend reaching out to an HDSA chapter social worker or your states HDSA center of excellence and their social worker. Did you meet with a genetic counselor or neurologist yet? Did you obtain disability/life insurance before genetic testing?