A question for the Hemophilia A Community

Who are your biggest supporters specifically when it comes to your or your loved one’s condition? For example, your doctor, friends, family, or someone else? And what are some examples of how they have supported you through this journey?

Answers from the Community

My parents are my biggest supporters because they make sure that I take my medicine and that everything works perfectly. Some other people in my life have been my doctors. I’ve had some great people in the hemophilia community that have given me the right treatments and that’s been a lot of help. Another great person has been my grandparents, they’ve always been supportive and made sure that I was safe. And a lot of people in the hemophilia community, I have a lot of people that hold me accountable there. And also my healthcare provider has always been a great, great help to me to make sure that everything goes as smooth as possible.

I have a huge support system. It’s mainly family, my spouse, my older children that also have this same condition. We are a family that’s very educated in this condition. So, my biggest support would have to be from family.

Some of my biggest supporters. It was my mom growing up. Now that I am grown, I do have several nurses that I rely on as friends and work in the medical community. I would like to see more people that are my age reaching out and joining other people with the same condition, such as the hemophilia, so they could make their lives better by reaching out, getting a support group, gaining some freedom from the depression and isolation that’s caused by the disease.

Throughout my life, my biggest supporters have definitely been my family. Specifically, probably my sister and my mom. Throughout my life, having pain and bleeds and plenty of times being holed up on the couch. Then yeah there’s always been steadfast by my side and just walked with me, and handled it with grace. And, just made me know that it’ll be over, with their grace, with their presence. Specifically, recently, my girlfriend has been a huge supporter. She gets mad at my ass quite often for not doing the things I should. Definitely keeps me accountable and advocates when I should. Out at parties telling me to sit down cause she can tell I’m hurting. So, yeah. I’m grateful.

Definitely the biggest supporters would be my family, friends as well a little bit but my wife helps me with actually getting treated every time I need to do that. Same thing with my dad, my mom, over the years making sure I get to the doctor’s appointments, making sure that I actually can inject myself, have the right resources and tools in place. And then even friends just helping along with different things like being more careful around me, making sure that I’m included, stuff like that.

My biggest supporter would have to be my friends that I’ve met in the hemophilia community because they have children also that have hemophilia and they would be my biggest supporters. But I have a very, very good relationship with my child’s doctor. I feel as though I can pick up the phone at any time and contact them to let them know what’s going on.

I would say my doctor or my family. My doctor especially letting us know that what she’s saying would be best for him, is what she would use for her child and that it’s okay for us to be nervous and it’s okay for us to ask questions.

Well, my biggest supporter would be probably my family, extended. I have several brothers that also have hemophilia, so my family’s always been involved in the hemophilia community. We’ve always been very supportive of each other, not letting each other make excuses for what we think we can do or can’t do or anything like that. My parents never tried to hold us back from doing anything within reason but you know, never let us have the mentality that we couldn’t do anything that we put our mind to. And then my wife as well. Right when she met me, she wanted to learn more about my disease and how she could best be a support to me. As she’s been with me through my ankle replacement like she did everything. Driving me around for work and everything, It’s just been a huge support.

My biggest supporter is obviously, one of the big ones is my doctor, who’s always been there to help me out and adjust medication when necessary and give me tips and advice and resources, whether it be online or other groups that I can talk to help me out. Although, I have to say truly my biggest supporter is my brother, who also has the disease. He’s obviously very understanding of what I’m going through, and we help each other out. If either one of us has a episode where we’re not able to walk or use our arms, we’re always coming over each other’s houses to help out with daily tasks, go shopping for each other, or just be there for support.

Biggest supporter is definitely my husband. We’ve been traveling this journey together, so only the two of us really know everything that we’ve gone through, all the little traumas that have gotten us to where we are now. We’ve had some really great friends that have been very supportive, and then the other big supporter in general would be the community. The community is such a close-knit community. Nobody really understands but the community what we deal with on a day to day basis. I’ve been blessed to be connected with hundreds of people in the community via social media, and at national conferences, and there’s a closeness like no other because of truly, understanding what it is that we deal with every day.

My husband and his family are the biggest supporters because they’ve had to deal with this their entire lives. And after that, the hemophilia clinic has just been fantastic. And the New York Blood Bank, they are a phenomenal service.

I’d have to say our biggest supporters are probably the doctors and the nurses at John Hopkins in Maryland, Baltimore. They’ve really helped us through the whole process, very understanding. Anytime we’ve had an issue, they’re always prompt to respond, help us through any difficult situations. That’s probably been our biggest supporters. An organization that really, I would say, get involve in this is with your local hemophilia foundation. We have one here in Maryland, and they’re very supportive. They do a lot of things together. I probably know now more why they do what they do, because it is a difficult disease to live with and it requires people to be understanding of what just a little bump on the head could do to a child. So it’s just things that you really need. That support, I would say, is the greatest. Family is good, but I don’t know if my family could step up and administer medicine. I think that’s where we’re alone right now, besides the doctors.

I did have a lot of support. My family, I have two daughters that are carriers as well. They help out when I need it, such as massaging my joints and so forth. But I would also have to say that I have a very good doctor and a nurse, and they do a really good job of taking care of me.

I think our biggest supporter would be our doctor and the nurses. They always encourage us to go with what we feel is best and give us all the options. They always make us feel like we made the confident decision in what we decided to do instead of them telling us that this is what we have to do.

I would say my biggest supporters are my wife and my daughter. Both can help me with infusions. My daughter has learned to do my infusions when she was three, has been doing them and she is now nine. So she’s been doing them for a while. My wife obviously, has helped me through surgeries and infusions and PICC lines and all sorts of things. My hemophilia treatment center has been nothing short of phenomenal. They have done everything they can to treat my bleeding disorder and keep my bleeding disorders at bay as aggressively as ever.

My biggest supporters are my family, my husband, my daughters, my mom, all of them, my sisters. Without them, I’m lost. Also, my doctor, the Hemophilia Center. They react very rapidly with information to the doctors. I am very thankful to the Hemophilia Center because they are the ones that instruct the doctors in the place in the city I live that they don’t have much knowledge on how to treat hemophilia patients. So, I’m very thankful to them. They have saved my life a couple of times when I was bleeding in ER without the medication and doctors there didn’t know what dose to give me.

My husband’s health representative has been a huge support. She takes us out to dinner, or lunch every month or two, to make sure everything is copacetic. We keep her updated, and we let her know if there’s any issues. And we can always reach out to the hemophilia team in Denver to make sure that he’s getting what he needs. His friends and his family support him and make sure that he’s also taking his factor, and making the right decisions. And if he has a bleed, he’s taking the AMICAR. I just think it’s really nice to have a lot of support during this, especially when there were times that it was very severe, and he could have lost his life then. We made sure that we kept the doctor, and his health representative, his family, and his friends updated, to make sure they knew what’s going on. And they helped him in any way they could. And I know there’s not much that can be done with this disease other than to just keep in touch with your doctor, and be honest about what’s going on.