Carrie Barnes Recker

Having your baby diagnosed with hemophilia is hard, even if you have a family history. . If you don’t have family history, it can shocking and seem tragic. The diagnosis and time after can severely affect your mental health.  Are you dealing with a new diagnosis? If you need help or support, the community is here for you.

“Carrier” is often used to describe women with hemophilia mutations.  Some of us dislike the use of carrier. How about you? Is your diagnosis “carrier” or “Symptomatic carrier” or “asymptomatic carrier?” How do you feel about the language used to describe women with an hemophilia mutation?

Getting your child ready for kindergarten is daunting. Getting your child with hemophilia ready for kindergarten is downright terrifying. How did you do it? What worked and what didn’t? Are you afraid? Let’s talk about it.

What are “Obligate Carriers?”  If a man with hemophilia has a daughter, she will be an Obligate Carrier.  That means she will always get the mutation for hemophilia from her father. Some men feel guilty for giving their daughter the mutation which might make them a hemophiliac. Some don’t.  Do you have daughter?  Is she an obligate car…[Read more]

Some women with hemophilia have a diagnosis and treatment plans, but have no medication at home.  No factor, no Stimate, no actual treatment.  Are you seen at an HTC? Have you been diagnosed with hemophilia? Do you use factor? Do you have a treatment plan? Does it have factor as part of your treatment? Do you have factor at home?  All of the…[Read more]

Girls with hemophilia are often overlooked when it comes to the hemophilia community.  But, the girls deserve notice and treatment, too!  Just like their brothers. Have you sought treatment for your daughter with hemophilia? Have you had your daughters tested for hemophilia? Has your daughter ever had a bleed? What did you do? Does your HTC t…[Read more]

Birth Control pills are often first line medication for heavy periods in girls with hemophilia.  IUDs (intrauterine devices) are another option.  Oral hormones often will raise the factor VIII levels in women with hemophilia, which in turn, decreases the length and heaviness of periods.  But, pills and IUDs are not for everyone. What have yo…[Read more]

It is fairly common for women with hemophilia to have at least one other bleeding disorder. How many bleeding disorders do you have? Clotting disorders? Other things? How do they interact with each other? Have you been diagnosed? Do you see multiple specialists?  Does your hematologist believe the other diagnosis?

So called microbleeds are the bleeds that are silent, small, and destructive.  It is believed that joint damage in hemophiliacs can be caused by microbleeds.  Do you think microbleeds impact your joint health? Have you heard of microbleeds before?

Have you heard of Microbleeds?  A study showed that women who carry a mutation for hemophilia have joint damage and range of motion limitation similar to male hemophiliacs.  The damage is caused by microbleeds.  Do you think microbleeds are real?  Do you think your joint health is impacted by microbleeds?  Are you on factor infusions for microbleeds?

Some hemophiliacs find infusing factor makes them feel better all over, not just at the bleed site.  Others describe factor infusions as pain medication.  Some describe feeling tired and off kilter. How does factor make you feel?  Do you find it causes a different side effect? How do factor infusions affect you?

Your Hemophilia Treatment Center can take care of your hemophilia needs, but you likely have additional Doctors who are not part of your HTC. Does your HTC get along with your other doctors? Are your other doctors willing to work with your HTC if needed?  Do you have any experiences where your HTC had to work with other doctors?

Homeopathic medicine is practiced by people who are not traditionally trained, but are trained in Homeopathy.  Have you used homeopathic medication?  Do you see an Homeopathic Practitioner?  Do you use homeopathy to treat your hemophilia? Any great salves or tinctures out there?

Have you ever been to a chiropractor?  If yes, did you have a good experience? If no, why not? Have you been warned to avoid chiropractors by your HTC?  Share your experience!

Exercise is very important in hemophilia. But, some exercise might result in bleeds. How do you exercise?  Are you afraid to exercise? What has been successful for you?

Are you on prophylaxis?  What is your schedule?  Do you treat on that schedule? Does it control your bleeding? Are you happy with your plan?

Being active is very important in hemophilia. There are many activities and sports to play.  But, some activities and sports are not recommended for people with hemophilia.  Have you been told to not play certain sports or activities?  Have you played sports or participated in activities that are not recommended for those with hemophilia?

There are some foods that can increase bleeding risk in individuals with hemophilia.  Some food can be eaten in moderation, and others avoided.  Are there any foods that make you more likely to bleed?  Are there any foods you have heard will increase bleeding risk?

Do you have a good relationship with your hematologist?  Has your hematologist ever told you you are not a hemophiliac? Do you feel respected and well cared for? Any stories you would like to share?

A Comprehensive Clinic is, generally, the yearly appointment with your hematologist, physical therapist, dentist, and other healthcare providers.  Do you go a Comprehensive Clinic with your children? How far away is your Hemophilia Treatment Center? Do you feel comfortable with your HTC?