Hemophilia Support Group

I am a 39 yo female. My father is a hemophiliac and is now suffering from many years of joint bleeds, etc..

He isnow losing vision in one of his eyes and the doc. is suggesting injections to stop or alter the bleeding. Possibly photocoagulation surgery or something of the sort. Does anyone have experience with this?????

Thanks!

Hi, My brother also has hemophilia A and he has very bad joint damange in his ankle's. He is 24 years old now. I would get a 2nd opition on that.

Does he go to a HTC?

He should speak to a HTC go to the NHF web site and find a HTC near you and get a 2nd option. I hope he is ok.

http://www.cdc.gov/ncbddd/hbd/htc_list.htm

or try this web site too:

http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx? menuid=249&contentid=385

I hope this helps u

Thanks so much for the info.! My father has really bad ankle problems too....They may decide to amputate,but they are waiting until the bone/joint is completely shot, as surgery (of course) is very risky.

I hope he will be ok. I would get a 2nd and 3rd option with his ankle's.

I would hear what other Dr's had to say before I let them amputate. Where do u guys live? We live in NYC.

I am very on top of my son and his hemophilia the Dr's wanna do an inhibitor test every 6 months but I have it done every 3 months. My brother who is 24 years old also has hemophilia. He got Hep. fROM THE BLOOD THAT WAS NOT CHECK. i ALSO HAD 2 Uncles who had sever hemophilia A one of my Uncles died when he was 3 but they did NOT have factor then back then they gave hom whole blood. And my other Uncle he died from HIV he got from the blood that was not checked. I hope I can help you. If you need help with anything just ask

Hugs

JoAnne

Joanne, {My moms's name is Joann!}

My father is not computer savvy, so I do research at home. I live in Ca. and my mom and dad live in KS.

A little history:

My Grandma was a carrier...had 8 children-4 boys and 4 girls. My father and my Uncle have Hemo.....5o/50...that is what my genetic counselor told me before I got pregnant. Insurance was willing to pay for sperm sorting so that I would be guaranteed to have a girl...I got "lucky" and had a girl anyway(2yo now). I do have Male cousins with Hemo.

My father was very lucky and somehow didn't get sick from his treatments over the years! I am sorry to hear about your family members.Hemo.is difficult enough to live with.We are alltoo aware of these HIV scares...my dad was tested for allof that stuff and miraculously came up clean!

Unfortunately, in my dad's time, they did not have very effective treatment for hemo. such as preventative care that is available now. Even if they did, they were poor and could not afford it.

This is probably why he is socrippled from the joint bleeds now. He says that he can feel when he is bleeding internally,but he hates being poked and prodded and just ignores it. He is waaaay stubborn and is not proactive. I think he is giving up. They were giving him Morphine and most recently Oxycontin for the pain.

I was hoping that we could find a non invasive treatment to clean out the joints, etc... to relieve some pain, but I have no clue what that would be. Most docs don't want to touch him-not even for a tooth extraction-for fear that he will bleed to death.

During the war in Vietnam, they took my dad to boot camp and he got injured there-twisted and mangled his ankle and fell down on his tail bone-massive bleeding.

He toldthem that he was a hemo. and his superior officer didn't believe it and tried to make him go back to training (infantry)! He got so bad w/the bleed that he went awol.Long story short...he is now on disability (not 100%) and doesn't want to lose it, so he does not want to go to a HMT because he says that those clinics make you register and share info.w/the Govt. Yadayada....I think he is waiting to keel over. He fought w/the Govt for a loooooong time just to get disability....what a joke, huh???

I am glad that you are so proactive about your son. I really believe that is key with this disease. Preventing the bleeds will spare him misery later in life...god,I hope Im not scaring you!

I can't help but think there are other disorders related to this disease in our family...for instance, most members of my Dads family have hip problems-including myself. Really bad hip pain.

It's all so frustrating! Thanks for listening...You can bend my ear too...my dad has been living with this for so long-he is convinced he knows more tahn the docs, and sometimes I believe it too! He has some really good insight!

I am so scraed for PJ at times. We have him wear a helmet all the time to protect his head and he wears padded clothes to keep him from getting bleeds. We tryed to put knee pads and elbow pads on him but he kept taking them off so that is why we padded all his clothes, So far PJ is 13 months old now and he has had 3 mouth bleeds, He was in ICU cause he hit his head, He had 2 hand bleeds {FrOm crawling} and a butt bleed. PJ is on prophy 2x aweek now we put numbing cream on him before we stick him so he dont feel the stick. You should see if your dad would wanna use the numbing cream so he dont have to feel the stick. I hope your dad will be OK. I am so happy that you had a lil girl. I have a lil girl too she is 3 years old now. I had my daughter 1st and they told us the same thing that we had a 50/50 chance when I was preg with PJ and I did an Amino and it came back postive for hemophilia.

My brother who is 24 has such bad ankle problems cause of his hemophilia he walks with a cane and he is on prophy 3x a week. He is ok but he can NOT walk for a long time. I am so happy they have factor now back then your dad and my Uncles had it so hard. It is so sad.

I hope he feels better and he should really see a hemotoligest they can help him. He needs care. With all the new meds and stuff there is NO reason for him to give up. God bless u and your family.

Hugs xoxoxooxoxo

It's so nice to have someone to talk to about this stuff. As you know,it is hard to watch your loved ones suffer so much. As for my dad, I don't think he has the will to fight it anymore. I am always looking for ways to make it better,but Ithink it is just exhausting for him.

I give you props because I know it is hard when you have kids w/out the extra worry. I used to babysit my cousin whom has Hemo. when he was a toddler. I was always scared he would hurt himself-and he did, but now he is a thriving adult!

I have to ask you...My husband wants a son-of course I am scared- Would you do it again? I mean, have another son? I know it's a personal question...This is the only thing holding me back right now!

I have included a photo of my Roma....

I love to talk to people about hemophilia cause if I could help I love would love to help another family

As for if I would have more kids the answer is NO. I have a 3 year old lil girl and I have PJ who has sever hemophilia A who is 13 months now. I was in your boat a while ago.My husband is Jewish and he wanted 5 kids when we got narried I agreed but after I had PJ and the hemophilia treatmet center {HTC} told us that once you have one baby with hemo the next time you chance goes up to 60/40 so I will NOT take the chance. I always say I am so happy that god gave us ShyAnne 1st cause if PJ was born 1st I would of never did this again.

I can not tell you if you should have more kids or not. That is up to you and your husband. But I want you to think about these things. Then make up your mind hunny.

Are you strong enough to care for a child with hemo?

Are you willing to give up your job {if u work}? I was working in the hospital for 5 years as a phelbotmist and I stopped working to stay at home with the kids. Mostly to care for PJ cause if he get's hurt a child with hemo needs factor within 2 hours before it will cause damange. I know I will get my son factor with in 2 hours but I dont trust no one else so I stay home to care for him.

Will you be able to still give your daughter attention wile caring for a baby that has a big problem? I find this one very hard. I get very lil time with my daughter to take her out with just me and her. Now that PJ is on prophy 2x a week I try to take het out alone. She does feel pushed to the side sometimes. We know that hospitals and getting stuck is not fun but for a 3 year old she get's very jelious.I put my daughter in Pre-K on the days that I take PJ to the hospital to get factor . This way she does not have to sit there with us. It is no fun for her.

Your husband wants a son but does he want a son with hemophilia? My husband wanted a son so bad. I got preg and it was a boy I did an Amino and when it came back positive that PJ had hemo my husband wanted me to give the baby up or take the baby out.Hr did not want PJ. He wanted a healthy baby boy. I told him I did not beleave in that and I was having the baby he knew when he married me that I was a carrier. I told him if he did not want this baby then he can leave. I stuck to my guns and my husband is learning how to deal with this. He loves his son now. My husband was so worried he could not do BOY things with PJ.but now a days you can as long as we give PJ factor fist he can do anything that you and I can do.

Also you need to ask your self is your marriage strong enough for this? Hemophilia put's so much stress on my marraige. Me and my husband fight so much over PJ's care so you guys will have to work as a team. Thta is the hardest part of all.

Are you and your husband gonna be able to give your son needels? I did that for a living so it was easy for me but most family's dont do it at home till the baby is 4 or 5 years old. So you will have to take your son 2 or 3x a week to get factored.

If PJ did NOT have hemo I would have more kids. I just have so much stress with the hemo and my daughter It just would not be fair to add another baby to all this.

Hemophilia should not stop you. You could have another girl or you could have a boy with out hemo.

Are you a carrier? If so you have a 50/50 chance and that is what I had I took the chance and my son has it. No matter what you will love your son with or with out hemo the question is do you wanna change your life to fit his needs?

Good luck I hope this helps you

Many hugs to you and your family

P.S.--->with all the meds out there now a days kids with hemo do live normal lives they just need factor and they can do anything you and I can do =)

Yes, I have thought all of these issues through. I am happy with one child and I am pushing 40, so other risks are involved.

My husband insists that he can handle a son w/hemo., but truthfully, I am the primary caregiver,so I would bear the brunt of it. I think I could handle it, but I'm not sure that I would want to put the child through it if it could be avoided.

I admire your tenacity and candor! I don't believe that many people really know how hard this disease can be on a family-you just have to live it. My dad wanted me to tell you not to shelter your little one too much as he gets older-LOL-he insists that it is so important to allow the kids to lead "normal lives"....now, I don't know how good that advice is considering that he did everything he wasn't supposed to do and is suffering now,but what do you expect from a stubborn old man? Haha!

Anyway,your son is lucky to have you...sounds like you are doing everything right!

As for giving injections, I have a needle phobia...soooo not too thrilled about that thought...LOL Then again,I had a booger phobia too and that is now a thing of the past thanks to Roma...LOL

I was reading a bit about prophy...is it the same as factor? They are saying good things about it when introduced to children at a young age....I wonder if it would have any positive effect on a 58yo as there is already damage to the joints? Did your brother have regular treatments? DO you know of any treatments available to repair the joints that is not so invasive?

It is hard to find data on older hemo's for the obvious reasons....

I did not get the picture of your daughter. I was looking but it does not show it. I love her name it is beautiful!

I was trying to upload a picture of my kids to you but the site wont let me. Maybe it is the computer.

Anyway... Prophy just means how many times a week the kids get factor. PJ right now takes Advate 557 IU's. He get's that Prophy {that means 2x or 3x a week}. This is to protect there joint's and to stop bleeds before they happen. Even though PJ has been on prophy since he was 11 months old he still get's break threw bleeds. So when he get's a bleed we factor he more that week. That would not be prophy but that would be extra factor that week. We also keep a bleeding log to see how many bleeds he gets and if they get better. PJ's bleed in his Butt was bad he needed factor 4x that week to stop the bleed .I think your dad should go on prophy it would be great for him.Does your dad have factor at home? We have factor at home and we have everything we need at home. We carry factor with us anytime we leave the house.

I just want to tell you that I would never want my life with out my son. I love him with all my heart. Because I love him so much when he is hurting from a bleed my heart breaks and I hurt just as much as him.I want you to understand it is very hard. I know your dad has hemo and so does my brother. So when I found out that PJ had hemo I though I could handle it. The truth is I deal with it but living with my brother he was not my responsibility so it is so different. PJ's life is in my hand's. If you are the care taker I think you should be ready. I had another baby cause my husband really wanted a boy. The truth is that all PJ's care falls on me I take him to the hospital 2x a week for factor if he has a bleed or not to keep his factor levels up. I keep the factor log I make all the Dr apt's. I pretty much do it all. On top of PJ's hemo he get's PT and OT for his joint's I have the therapists coming to my house for PT 3x a week OT 2x a week and he get's speech now 2x aweek. All this falls on me. I allso have my 3 year old daughter who I have to pick up from school drop off of school, ShyAnne has dancing school 1x a week, both kids have swimming 1x a week {we do swimming for PJ for his joint's the HTC told us to do this}, Shy also has gymnastic's 1x a week. So as you can see my life is so crazy. My husband is a mail man in NYC so he work's from 6-2:30 but he dont get home till 5:30. So all this falls on me.When you join the hemophilia community you meet such great people so nice and loving and they really understand how u feel and what you are going through. I think you could handle it but it will be hard. God would NEVER give you something you can NOT handle.

My brother started Prophy when he was around 10 years old he was born in 84 they just started that and they just started checking the blood.

The thing that scare's me the most with PJ is his head I am so scared he is gonna get a head bleed. that is so scary to me.

As for my daughter she is great. I just feel bad for her cause she wants to much of my attention and I just cant give it to her. She don't understand that PJ has a problem and he needs me but she needs me too. I know that but factor comes 1st before anything that is his life line. I try and take ShyAnne to get her nails done or to a park alone but do something so simply like that I need someone to watch the baby. Most people wont watch PJ they don't wanna be reasonable if something happens. That hurts my feelings. Sometimes I think people love my daughter more then my son. That is so bad but people really act that way. Hemophilia is hard but much better NOW then it was in the past.

Hugs xoxoxoxo