hemophilia

Is this a chat room with hemophilia as the topic?

i don't know... one would think so. at least i did, that's why i came here. but honestly i am still totally clueless.

anyway, i doubt anyone will have a response to this, but i have a question for all the hemophiliacs out there. As i hemophiliac myself i currently have a bleed in my chest and it is absolutley bizarre. i was lifting the other day, which i hadn't done in a while and after benching my chest became ridiculously pumped, not just pumped immediatley after but later that night and so on as it continued to grow. i thought i was just feeling sore so i didn't think to take any factor. a few days pass and i'm looking huge and feeling pain. i finally stop being stupid and give myself factor. my chest has since started to go down but, and this is the wierd part, all the excess blood, fluid, whatever that my pecs were holding couldn't keep holding it and it started to drain down and toward my sternum and some is now pocketed just below the center of my rib cage. i look totally deformed.
the thing about muscle bleeds is their too rare. if it's not a joint i'll think i've just pulled something. so anyone got any other hemophiliac horror stories they'd like to share, cause i have books to fill.

i have no horror stories about my hemophilia like that...

but i hope you saw your doctor!

well, when i was younger, about the age of 11 or 12.. i was riding those sliding garage doors to parking structures of the apartment across the street. i thought it'd be a genius idea to put my foot on the chain since it was oily and all...

as the gate was moving my foot of course, slipped and i couldnt do a darn thing as i had lost all control of myself and the gate was still moving, my legs were caught in between the box that was controlling the whole gate and the brick wall.

as i was getting closer to that engine box, i thought i was going to lose my legs... but i didnt... my legs were just heavily crushed in between and i made it through with my legs attached. i fell to the ground and i pulled myself away... in supreme throbbing pain, pains i've never felt before.

nothing was broken, but to thsi day,(i'm 21 now) i still ahve a very visible dent in my right knee.(about 2 inches above the knee)

My son has severe hemophilia with an inhibitor. He had a spontaneous head bleed at 3 months old. He is now 2 years old. Right now is healing healing from a spontaneous hematoma 8x4 cm left to his left kidney. He has had one joint bleed in the shoulder. So far I feel we are doing pretty good with him. He always wears a helmet and most of the time he has pads on his elbows and knees. We almost have a panic attack every time he falls. It was inherited, but I didnt get to spend alot of time with my father and now he is gone. So we have to learn as we go. Coty is in the international case study for inhibitors. It's been since January and we really havent got anywhere on getting rid of the inhibitor. Feel free to email me at kitten6782@yahoo.com

hi im a22 year old studying to be a nurse, and i have to find out the needs of people with haemophilia, whold any1 b able to help me (im so sorry if i seem rude) iv looked every where and cant find anythin,x

Study Girl I have an infant son with Hemophilia A Moderate I would more than happy to assist you. You can e-mail me at kendramell@yahoo.com
Hope to help.
Kendra

There has got to be an easier way to chat

anyone there?

Hi,
I'm doing a research paper on hemophilia and I thought that a good way to get real information on it, would be to ask the people who know it best. I hope that I'm not being rude, or disrespectful, but I would really appreciate some info. Please.
Thank You!

I'm guessing that people don't come on here often, so I will be back tomorrow. :)

Hi everyone.
I have a question about haemophilia and bleeding. I’m not sure if there is anyone here who does research in haemophilia, but what I would like to know is if smoking can decrease the amount of bleeds a person with haemophilia has. I’m not a doctor, but I understand that smoking thickens the blood and clotting inside the veins. Would it therefore help a person with a bleeding disorder to start smoking?
Any comments would be welcomed.

I'm still doing my research paper, and I too welcome coments, as well as information.

I am engaged in a medical market research study on Haemophillia A. I am interviewing adult sufferers and carers of sufferers who are under 18 years. The interviews which take about 60 minutes take place over the 'phone. Participants may remain anonymous and there is a cash incentive for anyone who takes part.
Anyone interested is invited to contact me, as soon as possible, on ba.alan@tiscali.co.uk

Again, I am the parent of an 8 month old boy who has hemophilia, I would be more than happy to assist you with your research studies, you can e-mail me at kendramell@yahoo.com just be sure you put something in the subject with regards to Hemophilia.
K

Marissa-student wrote:

I'm guessing that people don't come on here often, so I will be back tomorrow.:)

Hi marissa,
Just stumbled onto this website. have a son with hemophila and will be happy to help with any info you need.
Regards,
Vistasp

I have a son with severe hemophilia with inhibitors if I can help, I'd be happy to. Email kitten8266@yahoo.com

We have a 2 1/2 year old boy with hemophilia so we understand the frustration that no one is ever here. lol. We have formed our own website. www.cotysblood.com . We have a forum along with information thats scattered all over the web in one site. Check it out: www.cotysblood.com

Take part in an online discussion on haemophilia

Hi

We at The Patient Connection are currently running a research blog or online discussion on the subject of haemophilia

In particular we are interested in haemophilia as a genetic/family condition and any thoughts you might have about gene therapy

Apart from that we would love it if you could share your story or just post useful resources for fellow sufferers.

If you would like to join us please go to

http://www.thepatientconnections.com/blog.asp...

Thanks and remember your opinion counts

Best wishes

Belinda

PS The link will give you an option to join our formal research community and participate in research into the opinions of the haemophilia community later on in the year.

Hello, I'm 24 and I just found out that a friend at work has hemophilia. I'm uncomfortable asking him directly but am very interested in understanding what it's like and grow up with hemophilia. If anyone would like to share some of their experiences, I'm curious to understand more.