Hagemans factor

Found out I have Factor XII deficiency. I know it’s a 1 in a million disease but does anyone else know they have factor XII deficiency? I’m at a 1.8 🤣. I really want to talk about birth experiences now knowing that I am classified as high risk
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Okay I am nooo help at all having never heard of it but there might be related characteristics that make it high risk that you could share with others? I did a quick google and found this encouraging report? https://www.degruyter.com/document/doi/10.1515/crpm-2017-0035/html?lang=en&srsltid=AfmBOoqHkJOmOJm-Yv_tCu-xqO3g2j5MlBaxTfNTXDG4yEhjiUP2U6es

@Lor yes! They were shocked I had 0 complications with my first son, and were even more surprised when I had 0 miscarriages before him. I told them he was my accident baby, as I had him at 18!

@Lizzie oh I see I hadn’t checked your profile and presumed you had found this out whilst pregnant! I imagine that’s very weird retrospectively, you were blessed to have no had those symptoms with your little one!

@Lor should have clarified. I am trying to get pregnant again but I want to know what I’m getting into before I risk it now knowing anything could go wrong

Factor XII deficiency doesn’t tend to cause problems. It’s usually picked up from screening tests to look at clotting. Usually no special precautions are required unless other clotting issues are identified.

@Rueben I’m still so new to this. My doctors didn’t explain it well so I had to do some research at home. I’m worried about miscarriages more than anything else. They told me to notify my ob/gynecologist as I am now considered “high risk”

@Lizzie ah I see! You know I sometimes feel that ignorance is bliss as it obviously didn’t stop you before, we had routine tests done which led to us finding our son had a minuscule, rare deletion in his 22nd chromosome (like one of 26 known people in the world) which caused such an uproar and panic while I was pregnant and you know what he was born perfect and a year on hasn’t shown a single symptom that was predicted for him. So my point is, a lot of these things and doom and gloom stories come from the known cases which are only known because of the horrible outcomes they had and doesn’t account for the probable thousands of people that have it but were never tested for it because they never had any bad outcomes cause them to be tested in the first place. So my advice: try to utterly forget it, relax and just try for your baby like anyone else would and just pray and take each day at a time x

@Lizzie I’m sorry Lizzie. Was it your GP who explained it to you? They may not even understand it themselves TBH. Factor XII deficiency doesn’t actually make you prone to bleeding, your body still forms clots as normal. It just affects the tests in the lab to check clotting. There’s some suggestion that patients may be slightly at higher risk of forming blood clots but very little evidence to prove this. If this is a genetic condition- there’s nothing to be done. If it is acquired aka secondary to another condition, then the underlying condition just needs to be treated. If this is the only issue identified, it shouldn’t prevent you from having a healthy pregnancy. Please do let your OBGYN know and they can always liaise with or refer you to a Haematologist for reassurance.

@Rueben I am adopted so we are completely unsure if it genetic. I used to lose my hair and I bruise all those easy I think that is why they had me get even more testing. They admitted me and when I was telling them I was ttc they told me not to until I spoke with my ob about all precautions related to having a baby. Although I’m not super worried because I delivered my first one full term, save for going into early labor at 28 weeks. I’ve never really over bled, just had major issues bruising and extremely heavy periods, but I guess that is completely unrelated 🤣. It was the emergency room so I basically got no information as always 🥲

@Lizzie are you iron deficient? The symptoms you describe shouldn’t be caused by factor XII deficiency. Have you always bruised easily from childhood or is this something new?

@Rueben no iron deficiencies! Healthy as a horse besides the 1.8 in my factor 12. They couldn’t explain much to me, but health care is really really bad where I live as far as the hospitals go

I have always bruised easily, and for the most part I thought I was unhealthy because my foster parents did not allow me to do sports or see friends or literally do anything that would help me be if it from a healthier lifestyle

@Lizzie any problems with joints?

@Rueben yes. Diagnosed with JRA at like 12/13

Junior rheumatoid arthritis?

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If you haven’t had recent blood tests, it may be worth checking your platelet levels. Sometimes autoimmune conditions can cause low platelets, which help the blot to clot and therefore cause lots of bruises.

If there’s anything you are unsure of, feel free to message me.

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