Sticky Blood-Hughes Syndrome Support
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Just wondered ??

I just carried out hospital survey and one of the questions was had I been advised to have family members tested my answer was no.

But my daughter is nearly of age, when I as a responsible parent should consider broaching this subject with her (even though I know she is not sexually active) but I worry about any contraception given the risks ?

It would help if testing was offered to family although a negative reading is not 100% guarentee

5 Replies

When my daughter was 16 we explained to her about my condition, she knew I was ill and had strokes but she only knew about one of my pregancies . We had kept the other 7 secret from her. I asked if she wanted to be tested she said no, maybe in the future but I told her that she would have to tell doctors etc about my condition. When she was 19 she went for contraception and they would not give her the normal pill she had the injection due to my APS. My latest consultant on my first vist asked whether my daughter had been tested at the moment she dosent want to be tested but she has said before she has children she will be tested.



If she was not a sickly child and is not portraying symptoms herself (even if unlike yours) why test her now? I don't even think she should have the VERY CONTROVERSIAL shot. There are a lot of law suits going on in the states over this contraceptive. You should investigate it. This really could be a blessing in disguise because she is safest with a simple condom to protect her from STD's and HIV/AIDS. My 16 year old daughter ended up with cervical cancer via intercourse. She was on "the pill" but it does not protect agains STD's. It may be as antiquated as nylons and garters, but that's the lot she drew. My daughter had to return 8 times to have the cervical cancer BURNED away. What this did psychologically is unrepairable and she is no longer a candidate for "the pill'. That was a bump in her road and she is still dealing with it at 27. I see no need to have her tested for APS unless she is symptomatic. She was a very healthy child considering I never should have even had her. I was not diagnosed with APS then and did not take aspirin or any drug. As her brother was an 8-1.2 lbs. emergency C-section, we took her a little early (she was ready) as a repeat C-section to avoid all that emergency drama. She was only a 5.0 pounder, but we didn't have the heart to throw her back. No, really ...she made up for it and is a healthy young woman so far. However, she has not yet tried to concieve. She may or may not have more bumps in her journey. She's aware of my history now and should she become symptomatic, I am sure she will mention our family history. Although it is not thought to be genetic it is thought to "cluster" in families. I believe I have always had it as I was a very sickly child. In the early 50's they called it "failure to thrive". I can trace many a tia, mini stroke and finally major CVA in my father's history, as well as my great grandmother. The other thing is all three of us were smokers. My daughter never used tobacco. I've reformed for 15 years now. Gee, I can't believe it's been so long!

The point is ... "If it ain't broken, don't fix it." She is fast becoming a woman and will go on her own quest , in her own time, as she can handle it. So no worries, Gaul. Some things have a way of working themselves out. Smiles, prayers and luck on your journey.


Did I read this right? Did you say your16 year old daughter got cervical cancer from having sex?


Canary - My family history of blood related diseases is horrific :(

3 relatives died at 38 :( my mum had 5 dvts 2 x pe's undiagnosed - she was one of 6 and 4 of which have have had episodes

My mums twin sister died at 38 guaranteed had APS although she died in 1985

8 miscarriages 6 of which in third trimester :'( - she never suceeded with a pregnancy -

I would never agree to the injection ! I would however consider the mini pill along with condoms as I have had one pill pregnancy and 2 coil pregnancys

I have been very lucky with my babies only 3 miscarriages but very very early - In my pregnancys my babies seem to drain all the life out of me and stay healthy themselves

She is symptomatic - she is almost like a mirror image of me and my illness although I would never tell her ! She has had the HPV vaccine although this has no guarantees.

I was a very young mother and thats probably my problem here I just want her to have a life herself before she has children - too many babies having babies nowadays.

love and smiles :D


Wow! That's a "cluster". I do find it difficult to believe it is not genetic. I think it may be and they just can't prove it yet. In the medical field, if it can't be proved, it doesn't exist. Even if it is as obvious as your families history.

I went through a 5 year marriage and 4 years of fertility tests in the early 1970's with a different husband. I also had many miscarriages lost very early. And one at 24 weeks gestation.They told us to adopt and that they could find no reason I couldn't carry a child. I was divorced for many reasons. A year after my divorce, aged 28 and adjusted to the fact I would never carry a child, my very first partner impregnated me in one "session" shall we say. I didn't even consider I was pregnant until I was 5 mo pregnant. At 7 mo., I got thrombophlebitis in my left leg. It swelled twice the size, turned blue/gray and they put me to bed for the rest of my pregnancy. NO medication. He was a 10 month baby - born with "little old man syndrome" which is being in the womb too long. The babies physically look like they were in the bath too long with skin all wrinkled and features of a "little old man". He looked like a little alien. Both my children were billilruben babies. (They got their father's blood) They submit them to special light for a week or so, as they are very jaundiced, until their blood switches over. They have the mom's blood type in the womb and after birth they begin to change. He grew to be a very handsome, gifted in math, hyperactive little boy, but outgrew the hyperactivity as a man. He is now 31 and newly married to ... a gifted math teacher! When he was born, his uncle said "You ought to call that boy Justin Time, because they got him " just in time" with an emergency C-section. And with the help from the drugs from the hospital this struck me so funny and fitting at the time, that we DID! We called him JT all his life and he, along with his sister, is our greatest treasure and joy.

Now I understand your concern. Don't you wish you could just do their lives perfectly for them? Program them not to make the same mistakes you did? If she is a mirror case of you is she symptomatic now?

Unfortunately, it comes down to the same thing. "You can bring a horse to water, but you can't make him drink." She'll go on her own quest, in her own time, as she can handle it. She may be scared to death of the answers and so want avoid it until it is absolutely necessary. Especially since she witnessed your family history as well as your own history. I think if you force the matter or even dwell upon it too much, she may resent you for it. If her symptoms are not in her way, I think she's okay. When I was 16 I had a severe case of infectious mononeuculosis lasting 2 years. My greatest fear was feeling like a burden to my family or disappointng my parents in some way. Do you think your daughter needs treatment now? Or is this a prophylactic type of concern since it is so prevalant in your family? Have you asked her doctor? A conversation in his office on her regular check up may help a lot. Let the doctor be of help to you so you are not the "bad guy". That might be the answer.

I'm afraid after they are 18, we as moms are rather helpless. I would concentrate on just letting her know she can ask or tell you anything and you won't judge her, You would rather she be safe and that is why you mention it. I would be honest and tell her you wouldn't change her for the world, but you feel you could have done a better job if you had her later in life. That you were'nt fully grown yourself and you would want more for her. I'd never call her a mistake, but I would let her know, you know you could have done it better and you expect she will do it better.

I send you smiles, hugs and prayers for you and your family. Remember to take care of yourself because you set the example for her young womanhood. Even when you are gone, she will remember how you dealt with the problems of this disease. It would be nice for her to have your journals to read later in life. You should get her to start keeping one now and let her know that you keep one to keep track of your symptoms and keep your memory straight. None of us are perfect, but what's important is that we continue to try to improve. I sincerely hope this helps.



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