Ed Izenstark shares how he stays positive with the help of daily support from the Huntington’s disease community, and his firm belief in a cure.
I first heard of Huntington’s disease (HD) on the medical drama House. My parents say they had no idea about it before I started having a lot of symptoms and we were trying to figure out what it was in 2015.
I’m adopted, so that involved getting family history from medical records from when I was born. But those were sealed by the court. There’s a group in my county in Illinois whose purpose is to advocate for adopted people that are trying to find their medical history. They were able to track down my biological father who filled out a medical interrogatory form.
The adoption group redacts everything super personal from the medical records and releases it all to you. And they act as an intermediary. The first spot we saw HD was scribbled at the bottom of the guardian ad litem’s notes. It just said, “Huntington’s chorea,” and it wasn’t even spelled right. Presumably his bloodline was riddled with HD destruction.
I went to my neurologist and explained that to her. She’d only heard of HD in medical school and bet me that I did not have it. “There’s no way,” she said. But we did the test.
About a week and a half later I had my first appointment with an HD clinic just to get evaluated and see what they thought. They actually called the testing company and commandeered my test results from the other doctor. They called literally the next day saying the doctor needed to see me as soon as possible and they couldn’t explain why over the phone.
We went down the next morning for that discussion—I had HD.
Learning about HD
The information I got through the adoption advocates—none of it made sense. Just writing “huntingtonz” with a “z” and then putting “chorea” after it, that’s very confusing. That’s weird. Working with them led to the Associated Press writing an article about adoption reform and a bill being introduced in Illinois to reform the information you have access to when you’re an adult. After the article came out, a social worker from Huntington’s Disease Society of America (HDSA) reached out.
She put me in touch with Huntington’s Study Group (HSG), who runs clinical trials. They paired me with a drug trial. And I’m also in a few investigational studies.
HD changed my life in a lot of ways. I spend a lot of time in the clinical trial that’s at a hospital in a different state. So I fly every month to another state to receive an intravenous medication. The hope is the medication will reduce the Huntingtin protein (responsible for the symptoms of HD), which is exciting.
I deal more with psychological symptoms now. I’ve learned a lot about how HD works. I tend to be a positive person and try to spend more of my time doing advocacy stuff for HD than sitting around and being upset about it.
Naturally my wife was super upset, she probably is still super upset and hasn’t quite dealt with it, and that’s OK. My parents have been supportive—coming to advocacy walks and doing things like that. I have a tendency to try to rally people through events or fundraisers that can be beneficial to HDSA or HSG—the organizations that I’ve come to work along with. Building a support system is never a bad thing. I definitely look to my wife and kids for support. My kids—ages 7, 6 and 2 and a half—they’re awesome. I get a lot of my positivity, encouragement and silliness in life from my children.
For HD-related stuff, I find a lot of encouragement and positivity with everything that’s going on in clinical research. Multiple companies are developing treatment and somebody’s is going to do something awesome. I’m happy about that. I’m excited. When I got diagnosed, my doctor told me he doesn’t want me to worry too much because he is 100 percent confident that he will see a cure for HD in his lifetime.
At the time, of course I didn’t believe him. But, seriously—there’s going to be a cure in my lifetime. I’m not even questioning it because look at everything that’s going on. There are maybe seven different promising options right now.
If they do prove efficacy for one or more of them, the potential ripple effects that could have for Parkinson’s, Alzheimer’s or other related diagnoses is awesome. It’s just crazy to actually think about what they’re doing. It’s insane.
(If you want more information about those trials, go to HDSA’s “HD Trial Finder.”)
None of this is going to be easy
HD has taught me that none of this is going to be easy and I need to be incredibly persistent when dealing with everything and anything.
I’ve learned that I’m going to be irritated at my kids more. And sometimes I’m not going to be the best dad that I want to be. That’s OK—I need to learn to be OK with that.
I’ve learned that I need to make sure that I always keep my support system around me and appreciate them for how amazing they are. I’m sure that dealing with me and my irritability or my sometimes craziness, or random muscle movements—whatever—is obnoxious and I’m sure they are not ecstatic about it, but they deal with it.
I’ve learned that I’m going to go to doctors that are going to look at me like I am some sort of strange medical mystery. I had a doctor once walk up to me, give me a hug and want to shake my hand because they’d never met someone with HD. They were bewildered and wanted to do an impromptu exam to see what HD is. I let them know that’s not quite how this works. But most doctors are really cool and they’re intrigued by it. A few make it a little weird sometimes.
It would be awesome if more advocacy work were done to make sure doctors and nurses have a fundamental understanding of what HD is, and recognizing, treating, or dealing with HD patients to avoid uniformed or even painful interactions.
To the newly diagnosed, I would say: Don’t freak out. It’s going to be all right. Don’t go down the Google rabbit hole. Definitely join “Huntington’s Disease Support – The Good, The Bad, and The Ugly,” the largest Facebook support group. It’s 5,500 people that either have HD, or have or had spouses with HD, or are caregivers of people with HD. It’s just so much love and support. Once a week, everyone’s sending somebody’s relative birthday cards.
Reach out to an HDSA social worker because they’ll have local resources. Go to a nearby HD walk. In every community or HD Center of Excellence there’s going to be one or two people that are the HD magnet. They have access to all the information and have lots of resources and know people that can help you with whatever you need. Use HDSA’s search tool to find a social worker or find out who your HD buddy is going to be. Just reach out and ask for help.
And to medical providers, I would say: Check out Continuing Medical Education (CME) on HD. A lot of solid programs are available, but HSG just launched a pre-CME program for doctors and nurses to get free CME hours by taking super basic, fundamental courses on HD online.
My first couple years of diagnosis, my HDSA social worker checked in once a month. I kind of exploded to her one day about the trouble I was having applying for disability. And she sent me to Caring Voice Coalition (CVC). It was an awesome referral. And we’ve been in better shape ever since.
My Social Security case just went into “pending decision writing.” So we’ll see what they decide. The first time we applied for Social Security, the local office did not give a decision for the longest time because nobody there knew what HD was. They eventually told me that HD is not cancerous enough to qualify for SSA disability. Then later they denied it saying the genetic identifier of HD, my CAG repeat (learn more), was not positive for HD, which is not how that works at all.
Then CVC Patient Advocate Allison Bartlett got involved. I’ve put her through a lot of work. I had to send her a CD-ROM and three binders full of medical records when we first started. Even during my hearing, the judge made silly comments about the amount of records in the case. But Allison has been so awesome and patient with me—and my absolutely obnoxious phone calls every two weeks checking in to see if anything new happened.
I am extremely grateful to her for her patience and hopefully everything works out. We’re crossing our fingers and doing what everybody does—prayers, good thoughts, high fives, petting dachshund puppies or whatever—for good karma.
I recommend contacting CVC or another disability attorney as soon as you can in your disability process, rather than waiting until denial. If I had filed differently, it may have turned out better.
My hope is my HD stays very carefully, very methodically, almost pathologically managed. I want to stay right where I am forever, without deteriorating more—not my speech, swallowing, muscle movement—everything staying right here. I know that that may not be possible. But let’s just cross our fingers and hope that the experimental meds work, and that I’m not getting radiated for no reason.
For HD as a whole, I would love to see a cure. I would love to see more advocacy. I would love to see more of what we’re already doing. The entire HD community is already so loving and tight and friendly. Everyone’s a brother and a sister and let’s have just more of that, because we need that.
It’s an awesome thing that you can go to a walk and have like 9 million people around you and all of them will take care of you. We’re all one giant HD group of really crazy people and that’s scary but fun, all at the same time.