Monday, February 28, 2011

Guest Post: The Other Side of Cushing's -- The Caregivers

by Judy Kennedy

I have an (almost) ex husband & two children who all suffered from Cushing’s Disease. While they all had had symptoms for years, Justin was the first to exhibit signs of a true medical problem. Actually, it’s only with hindsight that I know the kids had had symptoms since birth & that Bill’s symptoms had been a constant presence in our lives.

I think I’d been looking for answers for Justin’s medical problems for about a year & a half and was convinced he had Cushing’s when I started noticing Jess exhibiting some of the same symptoms. The kids were partway through their testing before it occurred to Bill that he probably had the same thing.

I was immediately convinced it must be genetic although I was originally told there was no genetic link with Cushing’s. Since then, I know of several other families that have multiple members either diagnosed with or testing for Cushing’s. There is also research studying a genetic connection. In fact, my family is participating in a study.

It’s possible that I have a much different perspective since I’m on the outside looking in when it comes to this disease. I have no idea what it’s like to have Cushing’s but I know very well what it’s like to live with Cushing’s. It’s hell. I’m not trying to discount how a Cushing’s patient feels, I’m just trying to show the other side. So if it sounds like I’m making this all about me, I am. But keep in mind that I am very sympathetic to my family & all Cushies. I just happen to be talking from my point of view.

Many Cushies had children before they knew they had the disease. What I don’t understand are the ones who are so intent on having a child after they know they have Cushing’s. I understand the desire to have a natural child but at the same time I’m not sure I would want to risk passing on this disease. I’m guessing that not all cases are genetic but would I want to take that chance?

Many of you reading this know firsthand what it’s like to have Cushing’s. Would you wish that on your future children? Can you even imagine what it’s like from a mother’s perspective? It’s always worse to watch your children be sick than to be sick yourself. If it would have been possible I truly would have traded the disease for myself and given my kids their health. But I don’t have that power.

Know that the disease affects everyone differently but I did notice a lot of similarities in my family. Maybe that part is genetic also. Other families may have different experiences. I notice that I’m using a lot of disclaimers!!

Imagine what it’s like to have suicidal children, one much more so than the other. I went through months where upon leaving the house in the morning I had no idea if I would ever see my son alive again. It’s not good to hear your fourteen-year-old daughter that can barely drive, talk about thinking of taking the car & leaving in the middle of the night. It’s heartbreaking to find your seventeen year old son curled up under his desk sleeping some mornings, pillows piled in front of him. Was he keeping himself in or something out? It torments the mind to wonder what his thoughts were that lead him to that.

How awful of a mother am I that just seeing my son’s number on caller ID would make my blood run cold (that isn’t just an expression) and dread fill my heart? I hated that I reacted like that but for a few years it seemed he only called when he had problems, medical or otherwise. I learned to cope one crisis at a time and tried to think ahead to what else could go wrong.

Watching a child’s personality change within seconds was very unnerving. One minute things seemed fine and the next it was as if I could feel the anger & hate just radiating from their body. I tried to be an invisible person in the house. I was always the target for everyone’s anger. Even knowing it was part of the disease it got really old. I felt like a stranger in my family. Although I felt like I was doing all I could to get answers for them I sometimes felt like they held me responsible for their problems. It was my fault they had to test.

Even now after they all have a cure (a very relative term) things aren’t easy.

I also notice that there are Cushies who have some Cushie looking children & they don’t seem to notice. I sometimes wonder if they just aren’t ready to deal with it yet or if they really don’t notice.

I’m hoping I didn’t offend anyone. This was just some observations from a mother’s point of view. I’ve been telling my kids for years that I could easily love adopted grandchildren. While it’s not my decision I hope they take it seriously.


  1. I have Cushing's, and while I understand where this mother is coming from, I don't agree. While a few cases of Cushing's may be genetic, MOST are NOT. I can't help it - for a number of reasons, I really am offended by this post. There may also be a genetic component to rheumatoid arthritis, Parkinson's disease, multiple sclerosis, diabetes, depression etc, etc. Should people with a history of these diseases also deny themselves the privilege of becoming biological parents? I have nothing against adoption, and I am hoping that my husband and I can adopt one day. But seriously, the judgemental tone of this post really bothers me. This is not a one-size-fits-all disease.

  2. We don't really know whether most cases are genetic or not. I see many families with several members that look Cushie. Some have a family member that has a dx and some are just families I see around town.
    I think the difference between Cushing's & other diseases is that Cushing's affects so many (all) systems in the body.

  3. I'm not offended at all. I totally get Judy's perspective. I'm sitting here with 5 children, and so far, the oldest 2 testing positive for Cushing's. Had I known what was wrong with me, years ago, I would have stopped at one child, if I even had that one. Don't get me wrong. I love my children. It's just heart wrenching to see them go through this, and there is guilt! Even though I didn't know I had Cushing's (I did know something was wrong, but docs said no), I still feel responsible for passing this on to them.

    I'm not dreaming of whether my children will get the best grades, scholarships, great jobs. I'm worried about my kids being able to just graduate, then I wonder how they are going to physically manage "making it" in life! Will they be able to hold down jobs? I can't and I'm suppose to be cured. From my perspective, their futures look fairly bleak. It's one thing to be half way through your life and have to deal with this, but for them to have it so young, and look at an entire lifetime of sickness/disability is another story. Watching your child suffer with the flu is bad enough. Watching them suffer with a disease that is hard to diagnose, watching their bodies be destroyed, and you have no real control over any of it is just beyond what any words can express!

    I had a hard time getting pregnant, and I know the frustration that comes with the unwanted menstrual cycle each month when you want a baby so badly! I've been there and done that! When you are in that position it's hard to have a different perspective. Now I'm sitting on the other side. Sitting with guilt, worry, frustration, and grief.

    Having a child is each person's choice. I've never told my children that they shouldn't have any, so they don't pass this on. Even so, they are already saying they will probably adopt, and if they have any biological children, it will probably be just one. They don't want to watch their children go through what they are going through, and what they have watched me go through!

  4. Most people are told that Cushing's is usually not genetic, so they probably don't think there is much risk of passing it on to their children. Even if it is sometimes genetic, the chance that one person's case is genetic, and that they will pass it on, may be relatively small.

    I am just starting my testing for Cushing's, but I look at my mom and my aunt (her sister) and am convinced that they have it too. My aunt especially looks like a poster-child for Cushing's, and has had many health problems such as her lower back bones fusing together. Their father died after horrible diabetes that led to double amputation, kidney failure, and finally a heart attack.

    Now, if Cushing's does indeed run in my family, it does not seem to cause severe symptoms until later in life. While I have had some problems since my teens (weight gain, frequent infections, increasing irritability), many of the more annoying symptoms (severe joint pain, memory problems) did not develop until my late 20s. This is similar to my aunt, while my mom didn't have much problems until her 40s or 50s.

    I can understand Judy's point. I dread potentially having the medical issues that my aunt has had, (even before I knew about Cushing's). I guess from this perspective it is good that I am an only child, and my aunt never had kids because of endometriosis. But I still want to have kids, because they are likely to be adults before any problems develop. If they know that they are at risk for Cushing's, then they can have testing and treatment if and when they get any symptoms. Maybe it is not that simple, but it seems like Cushing's is not a death sentence and is treatable if diagnosed early enough. But everyone is different, so who knows what the future holds.

  5. EVERYONE stands the chance Of passing some illness or defect to your kids.

    So, should everyone with diabetes or cushings or depression or some hoistory of MS or autiam in their families never have kids? What about a family history of cancer? If only healthy people with healthy flawless family histories had kids, NO ONE could have kids. This isn't like having AIDS and knowing your kid will definietely have it.



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