Hemophilia and Living With Fear

Posted on September 04, 2019

Living with a bleeding disorder sometimes means living with fear. MyHemophiliaTeam members describe fears about bleeds fear for themselves and their children, fear about surgeries, dental work, and normal daily activities. Members recommend ways to be prepared, offering support and encouragement to help overcome fears and keep moving forward with life.

Surgery, dental work, and pregnancy can be especially daunting to those with bleeding disorders. Even with knowledgeable doctors who have a plan in place, MyHemophiliaTeam members worry that bleeding may get out of hand. Some members postpone needed treatments due to these fears. “So scared of surgeries with Von Willebrands!” wrote one member.

“Setting up my appointment to get my wisdom teeth out,” said another. “Kinda scared since I'm a bleeder and I don’t know what to expect.” One member expecting a baby wrote, “Currently four months pregnant, and the docs are deciding whether or not to do a C-section but I’m worried about my bleeding disorder. Everything is up in the air.” MyHemophiliaTeam members respond with support, urging each other to stay in contact with their nearest hemophilia treatment center (HTC) when facing medical or dental procedures.

The risk of a bleed occurring during normal daily activities can be just as worrying. “I'm terrified of getting a job for fear of injury,” wrote one MyHemophiliaTeam member. Members who have children with bleeding disorders frequently worry about bleeds as their kids navigate life. “Now that my toddler is walking, I find myself more worried for each fall and bruise I see,” wrote one parent. Another member responded, recommending knee and elbow pads and double diapering.The member added, “It will get better, and you will not be as stressed. I remember those days when my son was an infant. Stay strong. You can do it.”

Another parent wrote, “My severe son is starting daycare soon, and I am scared to death. He is 18 months old and very active.” A fellow member reassured her, saying, “Remember, although he is a hemophilic, he isn’t made of glass. He will be ok. Stay strong, momma.”

As parents watch their children take on sports and other physical activities, worry can become panic. “I'm worried for my grandson as he also has factor 8 and is unmedicated,” explained one MyHemophiliaTeam member. “My daughter wants to let him play sports that could lead to serious injuries, and with him not being medicated I'm just worried for his health.” “My 18-year-old son who is a severe hemophiliac is going to the boxing gym,” shared another. “I am terrified!” Another member responded “Sometimes the most terrifying feat mothers and fathers have is allowing their children to learn from experiences. Just remember to breathe… And so will he. You both will survive.”

One member shared a message of welcome and encouragement for a member who is a new mother to a baby with a bleeding disorder: “Hemophilia sounds scary at first, and there are its fair share of issues to deal with, but there’s no better time than now for your son. The treatment has improved incredibly over my lifetime and your son will thankfully not have to deal with any of the complications that my generation has had to. The medicines and factor products work amazingly well, and there will be so many exciting things to come to make living with hemophilia a snap.”

Fear is a common shared experience for many people with bleeding disorders. On MyHemophiliaTeam, members understand and are ready with support and reassurance.

Here are a few conversations about being afraid and finding support:

Here is a question-and-answer thread about fear around risky activities:

How much does fear of a bleed shape your decisions? How do you overcome fear? Share in the comments below or post on MyHemophiliaTeam.

A MyHemophiliaTeam Member said:

I have had periods that last 13-17 days , extremely heavy the first week to a regular flow with lots of clotting. I have tried for years to find out… read more

posted about 2 months ago


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