Hello, I have recently found out that I am a carrier of KD, which I have inherited from my farther. I am 22 years old and my family and I had no idea that KD was in our family history. My farther was diagnosed in Oct 05 and I tested positive in Feb 06. My family and I had never even heard of KD and as some of you know, it came as a massive shock.
As a carrier I am in a predicament as to whether or not go ahead and have children, with a 50% chance of the child getting KD or being a carrier.
As I am the only daughter, what ever my decision means the difference between stopping this inherited disease running though my family or for it to continue to my future children/grandchildren. My partner is very supportive, but I don’t think he is aware of how much I am considering not having children.
I would love other people’s opinion’s, someone who is in my position, or someone who decided to go ahead and have children.If you would prefer to email me please see my address below. This is such a difficult decision I can not see me ever being able to make a choice.


lucyandtj@yahoo.co.uk

I believe you you and your husband should consult with a genetic counselor. They can help you weigh all of the options available to you.

My personal opinion:

- Since I have KD

- and since 100% of your female offspring will become carriers and possibly 50% of your male offspring can have it;

- and, since it is a later onset disease (late 20's to early 40's) in males and substantially less symptoms show up in the females;

- and since researchers feel there will be a treatment or even a cure in the next ten years; ...

I would have children. They bring you so much joy in your life.

However, please check with a genetics counselor.

Thanks Bruce, Its nice to here from someone who is in the same position. We have been to see a genetic counselor and she explained all of our options and we talked though our worries and concerns, which did help. But I still feel torn. My partner and I are only 22 and maybe my thoughts and concers will change as I get older and feel ready to start a family.

I'm biased, since if my mother decided not to have me based on my genetic profile, I would not be writing this. The fix for this disease is in the works. If you have a son immediately, and he has the disease, it will not impact him for a further 30 years. I am confident that any grandchildren that I have down the road, if they have KD, will be able to get gene therapy.

Lucy-lu, I am an Australian Kennedy sufferer and my 35 year old daughter is a carrier. She has gained Australian Ethics Committee approval for genetic intervention in the IVF Program. Eggs and sperm were harvested, fertilized, tested and Kennedy free eggs re-implanted. My Kennedy free grandson is expected on 4th November. Good luck

That is fantastic news; I can imagine that you and your family are very happy and excited. Although this confuses me. When I was diagnosed as a carrier, I was under the impression that this sort of IVF treatment would be possible. But when I went to see my genetic councillor, she told me that the only IVF treatment available is one where they will make sure that I only have a baby girl, but even then there is still that chance that she would be a carrier.

The process is certainly very new in Australia. There are four or five genetic conditions which have approval for this procedure. To date, ours has been the first and only Kennedys to be approved. A specific test was developed to detect Kennedys in cells removed from eggs that had been fertalized using normal IVF techniques. That test was then used to exclude Kennedy effected fertalized eggs. Two uneffected eggs, one male and one female were then reimplanted and the male took. It isn't easy, but at least we know that Kennedys is finished in my branch of the family.

Hi Cliff
I have been newly diagnosed with being a carrier for KD. I am very interested to know more details about the IVF technique used for your daughter. Any further information such as the name of the technique or her doctor would be much appreciated.

Lucy-lu,

It's good you are thinking about this now. At 22 you have plenty of time to make the decision to have children.

I would discuss it with your partner and think it important for you to know if you have a supportive partner who will not be overly dissatisfied if you choose not to have children due to Kennedy's or for any other reason. And it's very good to know your partners full range of feelings in case you later decide you do want to bear children or adopt children.

Until you truly know both your own desires and your partner's wishes, please take great care regarding safe sex / birth control.

As far as the optimism regarding future treatment, I share in that optimism but realize that there are no guarantees. If you can hold off for another 5 to 10 years before having a child we'll all likely have a better sense of how much optimism is merited. And I as all others suffering with KD would be very glad to be 5 to 10 years younger...

Todd Allen

Lucy-lu,

Your posts inspired me to make my first! I'm in a similar situation as you, I'm 21 years old and a carrier and currently thinking about the implications if me and my partner were going to have a child. I understand how seriously you must be thinking about not getting pregnant - the idea my family's KD ending with me is so appealing. But like ToddAllen mentioned, you still have a lot more time to think about children. And if finding a genetic marker for KD in IVF is beginning now, imagine how mcuh development there would be by the time your 30?

Best of luck whatever path you choose

Aoife