[jrgator8815]

Does anyone have any information on a possible relationship between lupus and hemophilia? I've been reading a few things that sounded like I may have possibly passed along lupus antibodies to my son while I was pregnant, causing his clotting factor levels to be inacurrate. Hemophiliacs are not supposed to get "better." They have a certain level of factor and that's it. Alex was born with factor VIII activity of 0.5%. He had been tested twice since birth both at the same level. Recently at almost 1 year of age, his factor level has risen to 4.5%. Astonishing!!!! Yes, it's very possible he's just a hemophiliac as it does run in my family, however our oldest son tested not even close to being a hemophiliac, and Alex's levels are vastly different from any other member of the family with hemophilia, and he keeps improving. If me being sick, means that one day he may "out-grow" this and get better, then I'm all for it.

 

[KarolH]

I can not help you with this but I am sure someone will come along with knowledge for you. We have some very smart people here, just be patient.:wink2::wink2::wink2:

 

[jrgator8815]

I figured it may take a little while. Like I said, I could be completely off my rocker but you never know. Weird thing happen, and I wouldn't be a good mom if I didn't believe in the slightest of miracles for my kids.:wink2:

 

[Katharine]

Hi there,

I'm afraid I really can't help on this either as all I can find when googling is very technical and to do with lupus patients having "acquired haemophilia" and that being extremely rare.

Sorry not to be able to help there.

Katharine

 

[Moonunit]

I have von Willebrand's disease ("vWD"), which sometimes gets mistaken for hemophilia. Tests include Factor VIII and clotting times, like for hemophilia. My test numbers fluctuate from time to time. In my reading I have only found one possible link mentioned between SLE and vWD -- but I personally think it exists in my case. Hope this helps,

Moonunit

 

[Pink Pearl]

I have always had clotting issues, and was diagnosed as Von Willibrand's Disease back in the mid 1970's. About 5 years ago, that diagnosis was changed to "platelet function abnormality". The treatment is basically the same as VWD, but it operates a bit different. This version can go thru what I call "in control, and out of control." Meaning that there are times when I can clot basically normally, and others where clotting does NOT happen normally. I've learned to just adjust to it. I eventually clot, it just takes more time to get there.

My hematologist has determined that this is a side effect of lupus. He hasn't seen it before, but apparently found somewhere where it was documented. I was diagnosed with this at the Puget Sound Blood Center, [Seattle, WA] following their testing. Not common, but yes, it can be a part of it. Both the platelet function abnormality and VWD can affect both genders.

With the pfa the platelets are there, they just don't work. I liken it to getting an ice cube to stick on a vertical glass slab. Not gonna happen. I keep band aids handy in the kitchen and bathroom. That way if I cut myself, I have it all at hand to stop the bleeding. I have become superb at handling compression to stop bleeding. I've never known any different. Keep steri strips on hand......they are wonderful to keep cuts together. VERY handy!

With the variances between VWD and pfa, I would push for more research into this if it becomes a problem for your son.
I hope this helps.
Sally

 

[jrgator8815]

Thank you everyone for sharing your thoughts and stories with me. I pretty much have accepted the fact that my son has hemophilia, as it does run in my family. I was just hoping and praying that maybe my condition may have altered his labs, in which case he really wouldn't be as severe as he is. Holding on to a small miracle for at least one of us.
I truly feel for any of you who have connections to bleeding disorders. That alone is an emotional and physical roller coaster that no one will ever full understand unless it touches their lives. Couple that with a disease like lupus and the stress, anxiety, and cautiousness multiplies by 100. It's hard, but I believe you can do this! For the last week my son has been to the hospital (70 miles away) for a head bleed that required 2 CT scans, and 4 rounds of factor replacement. Tonight is our last trip. He's only 1, and we actually took a break for him to celebrate his first birthday on Tuesday. I didn't want him to have to be stuck with a needle on that day. The sheer exhaustion of being there for him, worrying, normal life (hsuband, 4 year old, dog, cats, house, etc.), and then myself is overwhelming. But we did it. And if we can get through that then we can get through anything. Just give me three days to sleep!:rotfl:
Thanks everyone and my thoughts and prayers are with you as you not only battle the setbacks that lupus cause, but also those of a bleeding disorder.

 

[babygirl1176]

hemophilia son

i have a son who has hemophillis a as well my son has less than 1 i hope your son is doing well we live in va my son is 9 years old i tried appyling for disability do u think he would be able to get it

 

[debatat]

Hi and welcome to the site. This thread is very old and the member who started it hasn't been active on the site since 2010. I suggest you start a thread of your own, that way you will get more replies. I am going to lock this thread.