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… 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… 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… 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… 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?

There are many kinds of bleeds that can occur in babies and children.  Nosebleeds are one of the most visible and upsetting. Nosebleeds can be dangerous and result in a significant blood loss. Does your child have nosebleeds?  Do you have any tips or tricks for treating nosebleeds?

Some popular supplements and herbs can increase the risk of bleeding in hemophilia.  Many individuals take supplement and herbs on a daily basis.  Most individuals are not aware of the risks of supplements.  Do you use supplements or herbs? Do you find some supplements and herbs have increased your bleeding risk?  Have you had a bleed you… Read more

A Comprehensive Clinic is, generally, the yearly appointment with your hematologist, physical therapist, dentist, and other healthcare providers.  Do you have a Comprehensive Clinic yearly? Every 2 years? Not at all?

Travel with hemophilia can be difficult. When you travel do you take factor and supplies?  Have you ever had a travel letter from your HTC? What about flying? Have you made it through all the security at an airport? Did they check your factor, did you get any additional scrutiny?

Do you get care from an HTC, or a private hematologist/oncologist, or a different type of doctor?  What has your experience been like? Has your experience impacted your treatment? Do you have a story to share?

Living with toddlers with hemophilia is challenging! Do you struggle to figure out if they have a bleed? Do you want to bubble wrap them for protection? How do you cope?

Traveling with children when they have hemophilia can be challenging. It might seem overwhelming. Do you have any tips, tricks, or hacks when you travel with your kids?  What about flying? Has your HTC given you a travel letter for your child’s meds?

These are unprecedented times.  We are all isolated from contact with other people.  How is the isolation affecting you? Do you have anger? Sadness? It is ok to be angry and sad.  But, if you need help, or are struggling with depression and isolation, please reach out.  Talking about it might not make it go away, but, it really can help.… Read more

The treatment of women in the hemophilia community has traditionally been poor.  We are either ignored or given inappropriate attention. We are called names and abused for claiming to be women with hemophilia.  We are abandoned by hematologists and left to bleed. Have you experienced any of these things? What stories do you have?

There is a problem with sexual harassment in the Hemophilia community.  Have you ever been sexually harassed by another member of the community?  What happened? What did you do? Did it stop?

Have you ever wished you could leave the hemophlia community? Have you ever taken a break from being active in the community? Do you wish you could?

Have you ever been to one of the large hemophilia conferences? NHF or HFA? What did you think?  Do you want to go?

Over the last several years, there has been a push to genotype and phenotype people in the hemophilia community.  Genotyping means finding the mutation that causes hemophilia. Have you been genotyped? Do you want to be?

Trampolines are a fun addition to any yard. But, they can be dangerous, especially for children with hemophilia. Do you allow play on trampolines?

Do you have heavy periods? Do they impact your sex life? Do you tell new boyfriends about your periods? How long do you wait to tell them?

Do you have long periods?  Has that impacted your sex life?  How do you approach the topic of long periods with new sexual partners?

Do you have access to prescription pain medication?  Do you need it? If you do, who prescribes it? Your treatment center? Your primary care physician?  If you don’t want to ever use prescription pain medication, why?

Do you think factor infusions treat pain?  Not just from a bleed, but from all your joints?  How do you feel overall after an infusion?

Do you have pain from hemophilia? From hemarthrosis or arthritis?  Do you get pain medication from your Doctor? Are you taking over the counter pain medication?  What is your pain story?

Has your daughter been diagnosed with a bleeding disorder? If there is replacement factor, has she been prescribed it? Does she get regular care at an Hemophilia Treatment Center? Is there resistance? How are you weathering this challenge?

Have you ever researched hemophilia in history? It has had a very important impact in history, and is very interesting. References to bleeding disorders go way back to early civilization. Is there anything you think is interesting in hemophilia in history?

Does the availability of patient assistance make a difference in your choices for treatment?  Have you spoken with your factor provider directly, or does your HTC or Home Care Company do it for you?  What have your experiences been?

Do your children self-infuse? Did you teach them, or did the learn from someone else? Can you self-infuse? How did you teach infusion to your kids?  Did you let them practice on you? Let’s talk about children and infusions. Self-infusion is empowering!

We celebrate first sticks and first successful treatments in our house.  Do you? We then celebrate first time sticking someone else. Then sticking yourself.  I think self-infusion is a huge thing.  My kids all learn first to stick us, then themselves. Do you celebrate progress toward self-infusion?

Are you involved in your local hemophilia chapter or association?  How are you involved? Do you attend learning sessions, family weekends, or other activity? Do you want to be involved? Do you have a skill or knowledge set you could share with the community? If you are not involved, that is ok, too.  But, why are you not involved?  Were you… Read more

 

As a not for profit organization, NHF needs to fund raise.  So do the chapters and associations.  What do you think is the best way to fund raise on a national level?  How would you fund raise on the local or sstate

Do you have factor at home? Are you allowed to be on prophylaxis, or treat on demand? I am not allowed to be on prophylaxis, but I do have factor at home for on demand treatment of bleeds. My dose is 35 units/kg.  My daughters have factor at home but at very low doses. They are only going to receive 10 units/kg. I have significant… Read more