Hemophilia A

Thanks to the major improvements in treatment and therapies for children with hemophilia A, your child is likely to live a normal lifespan. Learn more about living with hemophilia A here: https://www.hemophilia.org/

Your child’s school should know about his bleeding disorder in case something happens at school they will have a plan in place for his treatment and care.

People with hemophilia A bleed because they lack or have a shortage of factor VIII (FVIII). FVIII is a protein in our blood that is supposed to help us stop bleeding when we get hurt. Blood travels through the body through blood vessels. When blood vessels are damaged during an injury, we have many proteins in our blood that work together to form a sticky substance called a clot to stop blood from leaking. FVIII is one of those proteins that has an important job in forming clots. People who don’t have as much FVIII in their blood have a difficult time forming clots and keep bleeding when they aren’t supposed to. This is why people with hemophilia A bleed for a long time unless they get medication to stop the bleeding. Some people with severe hemophilia A take medication prophylactically, or before they get injured. This gives them a boost of FVIII in their blood so if they get injured, they have some FVIII to form clots. To learn more about blood clots, visit this site: http://www.wfh.org/en/page.aspx?pid=635

If you or your child have been diagnosed with hemophilia A, other family members should consider have testing as well. Sisters, mothers and aunts may be at risk to be carriers and may be at risk for also having a child with hemophilia A. To learn more about testing for hemophilia A, speak with your doctor or genetic counselor.

Hemophilia A treatment centers can be found all around the country. Experts in the treatment of hemophilia can provide education and support about hemophilia for you and your family. They can also provide your doctor with information for your treatment. To find a treatment center near you, visit the Federal Government’s nationwide network at https://www2a.cdc.gov/ncbddd/htcweb/Dir_Report/Dir_Search.asp

There are a lot of good support groups that can help you connect with other people with hemophilia A. Two great options are the Hemophilia Federation of America and the National Hemophilia Foundation. (The Hemophilia Federation of America) has specific in person and on-line programs for families, boys, girls, and other groups to help them develop meaningful connections within the bleeding disorders community and find support at both the local and national levels. (http://www.hemophiliafed.org/programs/) . (The National Hemophilia Foundation) has many, many resources, programs, and connection opportunities for people and families affected by bleeding disorders. There are also some Facebook support groups that may provide a different support experience including the National Hemophilia Foundation facebook group and the Our Hemophilia Community. Your genetic counselor or doctor may also be able to connect you with others with hemophilia A in your area including a local chapter of the national groups.

There are many great resources that can be found on the support group sites from the Hemophilia Federation of American and the National Hemophilia Foundation (NHF). The NHF specically has a detailed educational guide called "Steps for Living" that has great age-appropriate educational resources and suggestions for ways for people of all ages with hemophilia A to gain independence and feel more empowered. (https://stepsforliving.hemophilia.org/)

The inhibitors are antibodies made by the body’s protective system (immune system) and they think that the factor VIII protein is not supposed to be there, and then destroy that factor VIII protein. There are two types of inhibitors in hemophilia A; low-responding and high-responding. Low-responding means that they have a low amount of antibodies in response to factor VIII protein treatment. These inhibitors may disappear without any kind of treatment. High-responding means that they have a high amount of antibodies in their blood whenever they take factor treatment. To learn more, visit: http://www.hemophiliafed.org/bleeding-disorders/inhibitors/

If you have hemophilia A, you should see a hematologist (or blood specialist) for your care. A hematologist can provide recommendations specific to your bleeding disorder and symptoms. You should see a dentist who is familiar with bleeding disorders for your dental care. If you are a woman with hemophilia, you should see a gynecologist familiar with bleeding disorders for treatment for heavy menstrual bleeding.
Hemophilia A treatment centers can be found all around the country. Experts in the treatment of hemophilia can provide education and support about hemophilia for you and your family. They can also provide your doctor with information for your treatment. To find a treatment center near you, visit the Federal Government’s nationwide network at https://www2a.cdc.gov/ncbddd/htcweb/Dir_Report/Dir_Search.asp

Any serious injury or suspected bleeding in the head, eye, neck or throat, lower back, stomach, hip or groin area should be seen by emergency medical care immediately if you have hemophilia A. A bleed in one of these areas may be life threatening. You should seek emergency medical care if you have any of these types of bleeds.

Follow what your doctor tells you to do in terms of treatment for hemophilia A.
Go to the doctor regularly for wellness visits and include the recommended vaccinations.
Make sure you tell people who interact with your child on a regular basis about your child’s bleeding disorder. They need to know in order to avoid certain activities and in case of emergency.
Be aware of the symptoms of bleeding, both on the outside and on the inside. Know the difference between a bleed you can take care of at home versus a bleed that needs emergency medical treatment.

If you have hemophilia A, you should see a hematologist (or blood specialist) for your care. A hematologist can provide recommendations specific to your bleeding disorder and symptoms. You should see a dentist who is familiar with bleeding disorders for your dental care. If you are a woman with hemophilia, you should see a gynecologist familiar with bleeding disorders for treatment for heavy menstrual bleeding.
Hemophilia A treatment centers can be found all around the country. Experts in the treatment of hemophilia can provide education and support about hemophilia for you and your family. They can also provide your doctor with information for your treatment. To find a treatment center near you, visit the Federal Government’s nationwide network at https://www2a.cdc.gov/ncbddd/htcweb/Dir_Report/Dir_Search.asp.

You should tell your child’s teachers how important it is to understand how hemophilia A affects your child, and what to do if they have a bleed.

Nosebleeds can happen often if you have hemophilia A. They may be annoying, but very rarely need any advanced treatment. It is important that you tilt your head forward, and pinch your nose below the cartilage part of the nose. Alternate between pinching your nose for 10 minutes and placing ice on your nose. Do not tilt your head back or you may risk swallowing blood. It may help you reduce nosebleeds in the dry months if you have a humidifier or saline nose drops. If you feel the bleeding continues for too long, talk to your doctor or hemophilia treatment center.

Tylenol and other acetaminophen medications are safe to take if you have hemophilia A. Medications that can increase the risk for bleeding include aspirin (and other medicines containing salicylates) and nonsteroidal anti-inflammatory medicines (NSAIDS), such as ibuprofen and naproxen, can increase the risk for bleeding. Talk with your doctors about what pain medications may be right for you.

Early treatment is key to success. If you or your child has hemophilia A, you should be aware of the earliest signs of bleeding. Feelings of pain, tingling or warmth may mean that bleeding is occurring on the inside of your body. Bleeding on the inside is just as serious as bleeding on the outside, even if you can’t see it. The earlier you treat, the less likely there will be permanent damage. Talk to your doctor or Hemophilia Treatment Center about the earliest signs of bleeding and the importance of early treatment and follow up.

Factor VIII half-life is the amount of time it takes for the infused factor VIII in the blood stream to decrease its circulating concentration by half, or 50%. It’s calculated by taking a series of blood samples over a specified time span after infusing clotting factor, and then measuring how much factor remains in each sample. Making a graph of these samples shows how rapidly your body uses or eliminates the infused factor VIII. The half-life of factor VIII may vary from product to product, and from person to person.

Factor concentrate is purified factor VIII (FVIII) protein in a powdered form that is used for treatment to normalize clotting. There are two different types of factor concentrates for hemophilia A based on where the factor comes from. Plasma-derived factor concentrate is concentrated plasma (watery part of the blood) collected from human blood donors from across the nation. Recombinant factor concentrate is not made from human blood, but is a synthetic product, made in a laboratory. To learn more about the different types, speak with your doctor.

Stimate is the name for the nasal form of Desmopressin acetate (DDAVP), a synthetic hormone that helps stop bleeding in hemophilia A. This medication is taken through a nasal spray. Talk with your doctor about what treatment is right for you.

Hemophilia A is a genetic bleeding disorder caused by a change in a gene on the X chromosome called F8. This causes a lack or shortage of the factor VIII (FVIII) protein in their blood that is supposed to help form clots to stop bleeding in response to an injury. People who lack this protein often bleed longer than others and require medicine to stop bleeding. They may have frequent nosebleeds and can have internal bleeding, or bleeding inside their body, without any kind of injury. They also tend to have bleeding in their joints and muscles. People with a severe type of hemophilia A have more bleeding symptoms than people with a mild type. You can read more about the signs and symptoms of hemophilia A here: https://www.nhlbi.nih.gov/health/health-topics/topics/hemophilia/signs

In November 2017, the FDA in the U.S. approved the use of HEMLIBRA® (emicizumab-kxwh; Genentech, Inc.) for certain adults and children living in the U.S. with hemophilia A. Hemlibra is an injectable prescription medication used to prevent or reduce the frequency of bleeding episodes in people with hemophilia A. It is only meant to be used for those who have developed antibodies called Factor VIII inhibitors (or FVIII inhibitors). The medication works by activating and replacing normal blood clotting factors that a person with hemophilia A might not have. By doing this, Hemlibra helps increase normal blood clotting in patients. This medication is given once weekly as a subcutaneous (sub Q) injection.

DDAVP (desmopressin acetate) is a synthetic, laboratory made, hormone that can be used in some patients with a mild type of hemophilia A. What this medication does is cause the body to release any stored factor VIII protein and another clotting protein (von Willebrand factor) in order to form clots. This can be used during minor bleeds in order to stop bleeding. However, not all people with hemophilia A will respond to DDAVP, meaning some people’s bodies may not release any factor VIII protein at all when they take DDAVP. Your doctor can do a test to determine if DDAVP treatment works for you or your child. DDAVP is not effective in patients with hemophilia B or severe hemophilia A. Talk to your doctor to determine what treatment is best for you.

Amicar (aminocaproic acid) is an oral medication that works to prevent your body from breaking down the clots as quickly as it might normally. Some people with hemophilia A use Amicar after dental care or mouth bleeding. Talk with your doctor to see if Amicar is right for you.

A medical alert bracelet can have your name, disease type and treatment for bleeds in hemophilia A. It is a great tool to have if you are ever in an emergency situation. Talk with your doctor to get more information on medical alert bracelets.

The signs of having a urinary tract bleed, or a bleed that happens in the kidneys, bladder or other parts of the urinary tract, include urine that is bright red or deep brown, lower back pain, groin pain, and painful or frequent urination. Talk to your doctor if you have hemophilia A and think you have a urinary tract bleed.

Throat or neck bleeding can become a life-threatening situation. This may happen in response to an injury or dental work or no injury at all in hemophilia A. Signs may include neck swelling, feeling like you are choking, difficulty swallowing, difficulty breathing, sudden hoarseness. If you think you or your child have bleeding into the throat or neck, seek immediate medical attention.

Bleeding inside of the head is a serious problem for anyone and emergency medical help should be sought as soon as possible; especially if the person has hemophilia A. Signs may include sleepiness or unexplained irritability in infants, severe or really long headaches, confusion, extreme drowsiness, vomiting, sudden poor coordination, stiff neck, stiff back, vomiting, numbness or loss of feeling, seizures, or loss of consciousness. If you are experiencing any of these symptoms and have hemophilia A, seek medical attention.

Signs of bleeding into a muscle in hemophilia A may include pain with movement, warmth, tightness, numbness, or tingling in a muscle. Bleeding of this type requires factor treatment. If bleeds are not treated, there may be long-term nerve or tissue damage. If you are experiencing this type of bleed, speak with your doctor.

Side effects desmopressin acetate (DDAVP) may include headaches, flushing, changes in blood pressure as well as nausea. It is important for people with hemophilia A who take DDAVP to monitor and limit their fluids for 24 hours after taking the medication. DDAVP causes the body to hold onto water, so it can be dangerous for you to drink too much liquid after taking DDAVP. Since DDAVP is synthetic, made in a laboratory not from human blood, there aren’t any risks for disease related to the medication. Talk with your doctor if you experience any of these side effects while taking DDAVP.

The symptoms of hemophilia A depend on how much factor VIII (FVIII) protein you have in your blood. Those with less FVIII have more severe symptoms and have severe hemophilia A. Those with severe hemophilia A may bleed spontaneously without any injury. Symptoms may include a lot of bleeding from small injuries, unexplained severe bruises, swollen and painful joints, blood in urine or stool, long and severe nosebleeds without injury as well as a lot of bleeding after surgeries and dental work. Those with mild hemophilia A may only have longer bleeding after surgery or after injuries. To learn more about symptoms, you may wish to speak with a genetic counselor. You can find one in your area here: http://nsgc.org/p/cm/ld/fid=164

As children grow up, they may want to take on more independence. One way children and teenagers with hemophilia A can do this with their medical treatment is to learn how to self-infuse and give themselves treatment at home. They can learn how to self-infuse, and how to organize appointments, and their treatment schedule. To see if self-infusion is right for you and your child, speak with their doctor. The National Hemophilia Foundation also has a detailed guide called "Steps for Living" that has great age-appropriate educational resources and suggestions for ways for children with hemophilia to gain independence and feel more empowered. (https://stepsforliving.hemophilia.org/)

Learning how to self-infuse, give themselves treatment, is an important part of managing your child’s hemophilia A, especially if you want to receive treatment at home. All members of your family can learn how to infuse factor treatment to better provide care for your child with a bleeding disorder. Some treatment centers offer lessons on how to self-infuse, others have annual hemophilia summer camps where they provide these techniques. Speak with your doctor about self-infusion options.

It is recommended by the Centers for Disease Control (CDC) for all children, including children with hemophilia A, to receive immunizations. Your child may need clotting factor treatment before some immunizations to prevent bleeding or bruising. Apply an ice pack for five minutes before and after vaccination. Talk to your hematologist for their recommendations for treatment for vaccinations.

About 15-20% of people with hemophilia A can develop inhibitors against factor VIII and if someone develops inhibitors, it tends to happen in early childhood. Hemophilia A screening regularly checks for this. The inhibitors are antibodies made by the body’s protective system (immune system) and they think that the factor VIII protein is not supposed to be there, and then destroy that factor VIII protein. They are more common in those with a severe type of hemophilia A or a family history of inhibitors. People who have hemophilia A and inhibitors require special medications. To learn more, speak with your doctor.

Babies with hemophilia A who are teething may have mouth bleeds. Bleeding can happen when babies bite hard objects, from the teeth growing in, or from small cuts in the gums or tongue. You may notice your child has red drool which may be the first sign of mouth bleeding. First, check the mouth to see why the mouth is bleeding. If it keeps bleeding for multiple hours, contact your hematologist or hemophilia treatment center. Amicar is an oral medication that works to prevent your body from breaking down the clots and may help treat mouth bleeds. Tongue bleeds and bleeding in the bottom of the mouth may require clotting factor treatment. Talk with your child’s doctor to learn more about what to expect when your child begins teething.

Newborn screening is a state run program that screens babies at birth for certain serious medical conditions. Newborn Screening is not currently being performed for hemophilia A. To learn about what conditions are being screened for, visit: http://www.babysfirsttest.org/newborn-screening/states

As of December 2017, there is no cure for hemophilia A. There are different medications for hemophilia A to prevent bleeding and stop active bleeding. The main treatment is through concentrated factor VIII (FVIII) protein product. Some people with hemophilia A may only need treatment after an injury. Others may be on a treatment regimen taking FVIII product before bleeds occur. This is order to have enough clotting factor in their blood to prevent bleeds when they happen. This is especially recommended for children with severe hemophilia A.

In November 2017, the FDA in the U.S. approved the use of HEMLIBRA® (emicizumab-kxwh; Genentech, Inc.) for certain adults and children living in the U.S. with hemophilia A. Hemlibra is an injectable prescription medication used to prevent or reduce the frequency of bleeding episodes in people with hemophilia A. It is only meant to be used for those who have developed antibodies called Factor VIII inhibitors (or FVIII inhibitors). The medication works by activating and replacing normal blood clotting factors that a person with hemophilia A might not have. By doing this, Hemlibra helps increase normal blood clotting in patients. This medication is given once weekly as a subcutaneous (sub Q) injection.

Desmopressin acetate (DDAVP) is a synthetic hormone that helps stop bleeding. This may help those with more mild forms of hemophilia for joint, muscle and nose bleeds. To learn more about treatments for hemophilia A, speak with your doctor.

Any type of product made from human blood has the potential to have viruses, and other unwanted proteins. However, the drug companies that develop these treatments use several methods to treat the plasma-derived concentrates (factor VIII protein collected from human blood) in order to decrease the chance of this. However, most patients with hemophilia A are treated with recombinant products (synthetic and laboratory made factor VIII protein) rather than plasma-derived products. Talk to your doctor about which treatment is best for you or your child.

It is important for those with hemophilia A to remain physically active in order to strengthen joints, keep flexible muscles, and maintain a healthy weight. However, certain exercises may be unsafe for people with hemophilia A. Activities such as football, hockey, wrestling, and soccer are high impact sports and increase the risk for serious injury. Swimming, walking, biking and golf are lower impact exercises that are recommended for people with bleeding disorders. Physical therapists can also help teach and create safe exercise programs. Talk to your doctor about exercises that may be better for your health.

Two prolonged half-life factor VIII products on the US market are Eloctate (from Biogen) and Adynovate (from Baxalta). Eloctate has a half-life of 19 hours, while Adynovate
has a half-life of 14.3 hours. There are also 3 other factor VIII products in clinical trials or under review by the FDA: N8-GP GlycoPEG-FVIII by Novo Nordisk, BAY94-9027 PEG-FVIII by Bayer, and rVIII-SingleChain Single-chain FVIII from Behring.

Easy bruising is a common symptom of hemophilia A. Bruising is a small amount of bleeding under the skin. Bruises may appear to be many colors and may have a small knot felt in the middle of the bruise. Treatment with clotting factor is not usually needed for bruising. The best thing to do is ice the bruise. Speak with your doctor if you experience bruises that last for prolonged periods of time.

In addition to your child’s healthcare providers, you may want to tell the school nurse, the physical education teacher, and other teachers at your child’s school.

Treatment for hemophilia A can be given at home, and many people take treatment prophylactically, or before injury. If you have hemophilia A and are injured, you should go seek help if the treatment does not resolve the injury. Some of the emergency signs and symptoms include sudden pain or swelling and warmth in large joints and arm and leg muscles, if you have severe bleeding from an injury, very painful and prolonged headache, severe vomiting or fatigue, neck pain or double vision, you need to seek emergency medical care.

If you have a family history of hemophilia A, you should talk to your doctor or a genetic counselor if you are or are planning to become pregnant. They can help you determine if you are a carrier of hemophilia A. Carriers of hemophilia A often do not have symptoms, but can pass hemophilia A to a child. If you are pregnant, testing is available to learn if a baby has inherited hemophilia A. To find a genetic counselor in your area, visit: http://nsgc.org/p/cm/ld/fid=164

Around 1 out of 5,000 boys in the United States are born with hemophilia A according to the US Centers for Disease Control and Prevention. This is about 400 babies a year affected by hemophilia A. Around 20,000 people are living with hemophilia in the US today. About half of people with hemophilia A have a severe type of the disease. All ethnicities and racial groups are affected equally by hemophilia. To learn more about how common hemophilia A is, follow this link: http://www.cdc.gov/ncbddd/hemophilia/data.html

There are a number of different blood tests that your doctor can perform to determine if you or your child has hemophilia A. If they suspect that you or your child has hemophilia A, they will start by ordering series of tests known as a coagulation study. This will help point to whether or not you have a bleeding disorder, and if so, what type you may have. These tests include a prothombin time, bleeding time, fibrinogen level, partial thromboplastin time, and serum factor VIII activity. Depending on those results, you may be recommended to have genetic testing of the F8 gene to confirm the diagnosis. The F8 gene is the only gene known to cause hemophilia A. A change (mutation) in F8 is detected in about 98% of individuals with hemophilia A. If you are the first person in your family to be diagnosed with hemophilia A, your doctor or genetic counselor may order molecular genetic testing of the entire F8 gene to find the change in you. If you already know someone in your family has hemophilia A that has been confirmed through genetic testing, you can have genetic testing to see if you have that same change in the F8 gene. There are many laboratories that perform genetic testing. To learn more about testing for hemophilia A, speak with your doctor or genetic counselor.

Hemophilia A is caused by changes (mutations) in the F8 gene on the X chromosome. Chromosomes are what contains our genetic material. Women have two X chromosomes (XX) and men have one X and one Y chromosome (XY). This means that women have two copies of the F8 gene and men only have one. A change in the F8 gene causes this gene to not work the way it should. The F8 gene has the instructions for the factor VIII (FVIII) protein, which is important to blood clotting. A gene change in F8 causes a deficiency, lack or shortage, of FVIII. Women are commonly called ‘carriers’ of hemophilia A because they ‘carry’ one mutation in one copy of their F8 gene on one of their X chromosomes. Women are often not affected because they have a back up working copy of the F8 gene on their other X chromosome and enough FVIII protein for clotting. Men who inherit a non-working copy of the F8 gene on their X chromosome are often affected with hemophilia A because they only have one copy of the X chromosome and deficient, or not enough, amounts of FVIII. In 70% of cases this change is inherited, or passed down in families. However, in 30% of people with hemophilia A, it happens for the first time in that person. To learn more about how genes are passed down in families, visit: https://ghr.nlm.nih.gov/primer/inheritance/inheritancepatterns

Treatment for hemophilia A is very expensive. Bleeding to a joint can cost between $200 and $6,000 for one treatment, depending on the weight of the child. Someone with hemophilia A can spend anywhere from $40,000 to over $200,000 a year for medical care. However, many private health insurances and Medicaid programs in the U.S. cover the cost of medically necessary care and there are resources available for those who need them. To learn about your insurance benefits, speak with a specialist from your insurance company.

Often the first sign of hemophilia A in a baby boy is severe bleeding after circumcision. You may also notice severe and easy bruising as your young child begins to move around more. If your child has this easy bruising, talk to your doctor about testing for hemophilia A. Children with hemophilia A can have bleeding without any cause and longer bleeding after surgery, dental procedures or injury. If your child has severe bleeding that won’t stop, seek emergency medical care. Severe hemophilia A is often diagnosed before the age of 2 and moderate hemophilia A by the age of 5 or 6. If you think your child may have hemophilia A, speak with your child’s physician.

Clinical research involves studies into new medications or approaches to treatment. There are currently a number of clinical trials being conducted for people with hemophilia A. If you would like to find more information about these clinical trials, go to https://clinicaltrials.gov.

Hemophilia A treatment centers can be found all around the country. Experts in the treatment of hemophilia can provide education and support about hemophilia for you and your family. They can also provide your doctor with information for your treatment. To find a treatment center near you, visit the Federal Government’s nationwide network at https://www2a.cdc.gov/ncbddd/htcweb/Dir_Report/Dir_Search.asp.

Hemophilia A is caused by changes (mutations) in the F8 gene on the X chromosome. Chromosomes are what contain our genetic material. Women have two X chromosomes (XX) and men have one X and one Y chromosome (XY). This means that women have two copies of the F8 gene and men only have one. A change in the F8 gene causes this gene to not work the way it should. The F8 gene has the instructions for the factor VIII (FVIII) protein, which is important to blood clotting. A gene change in F8 causes a deficiency, lack or shortage, of FVIII. Women are commonly called ‘carriers’ of hemophilia A because they ‘carry’ one mutation in one copy of their F8 gene on one of their X chromosomes. Women are often not affected because they have a back up working copy of the F8 gene on their other X chromosome and enough FVIII protein for clotting. Men who inherit a non-working copy of the F8 gene on their X chromosome are often affected with hemophilia A because they only have one copy of the X chromosome and deficient, or not enough, amounts of FVIII. In 70% of people with hemophilia A, the change in F8 is inherited, or passed down in families. However, in 30% of people with hemophilia A, it happens for the first time in that person. To learn more about how genes are passed down in families, visit: https://ghr.nlm.nih.gov/primer/inheritance/inheritancepatterns

How severe somebody bleeds depends on how much factor VIII (FVIII) protein they have in their blood. People who don’t have hemophilia A have 50-150% of FVIII in their blood. People with a mild type of hemophilia A have between 6-49% of FVIII in their blood. Those with a mild type usually have bleeding only after injury and are often not diagnosed until they are adults. People with 1-5% of FVIII in their blood have a moderate type. With moderate hemophilia A, bleeding can occur after minor injury and sometimes without injury at all. These people are usually diagnosed by age 5-6 years. People with less than 1% FVIII in their blood have the severe type and can bleed often with no injury. Those with severe hemophilia A are diagnosed by age 2 and can have multiple bleeds a month unless they receive treatment. If you or a family member are concerned about abnormal bleeding, you may want to contact your doctor.

Some children with hemophilia A will need prophylactic factor treatment to help prevent bleeding problems. These children generally have a severe type of hemophilia A and have bleeding problems that are spontaneous, meaning no injury caused the bleed. This type of treatment usually begins when the child is around 1 year old or after the first major joint bleeds. This regimen generally consists of a once-a-week factor treatment. The frequency of this treatment regimen, schedule, may increase as the child gets older. Talk to your hematologist if you feel like your child may benefit from prophylactic treatment.

Certain medications can make the symptoms of hemophilia A worse. Medications that can increase the risk for bleeding include aspirin (and other medicines containing salicylates) and nonsteroidal anti-inflammatory medicines (NSAIDS), such as ibuprofen and naproxen, can increase the risk for bleeding. If you are concerned that a medication you are taking may be making the symptoms of hemophilia A worse, speak with your physicians.

Women can be affected with hemophilia A. Women are most often carriers, meaning they do not have hemophilia A but can have sons with this condition. Women who are carriers have one working copy and one non-working copy of the F8 gene on their X chromosomes. However, about 10% of women who are carriers of hemophilia A have some symptoms of hemophilia A. They may experience heavy periods, easy bruising and easy bleeding. Talk to your doctor if you think you may be experiencing some of these symptoms and you have a family history of hemophilia A.

Treatment for hemophilia A can be given in an outpatient clinic setting, at an emergency room or at home. Receiving treatment at home can make your child’s bleeding disorder feel more normal as well as decrease trips to the hospital. Talk to your doctor about whether or not home treatment is right for your family.

Hemophilia A is also known as factor VIII deficiency because those with hemophilia A have a deficiency, a lack or shortage, of this protein in their blood. Hemophilia A can also be confused with hemophilia B, a more rare type of hemophilia. They both have similar symptoms, but are due to changes in different genes and result in different protein deficiencies. Hemophilia A is also known as Classical Hemophilia.

There are several great support options for families and patients living with hemophilia A which have slightly different missions and focuses. Two great options are the Hemophilia Federation of America and the National Hemophilia Foundation. (The Hemophilia Federation of America) was created to address the evolving needs of the bleeding disorders community and serve as a consumer advocate for safe, affordable, and obtainable blood products and health coverage, as well as a better quality of life for all persons with bleeding disorders. (The National Hemophilia Foundation) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. There are also some Facebook support groups that may provide a different support experience including Our Hemophilia Community.

There are many different diseases that may look like hemophilia A. In particular, hemophilia B has similar health problems and symptoms. There are also many other genetic bleeding disorders like Von Willebrand Disease that are associated with severe bleeding and easy bruising. Beyond genetic conditions, acquired hemophilia is an autoimmune disorder also characterized by bleeding. Autoimmune disorders happen when the body’s immune system attacks healthy cells by mistake. In acquired hemophilia, the body’s cells attack the clotting factors. If you experience easy bleeding and easy bruising, talk to your doctor about possible causes.

There are many apps that can help manage your hemophilia A. HemMobile and MyFactor are both apps that can help manage your bleeding symptoms and transfusions. Living Fit! A Joint Effort is a program that helps young people with hemophilia A live a healthy and fit life. Visit the app store to learn more about how these apps may help you.

There are a lot of summer camps for children with hemophilia A where they can meet other kids with bleeding disorders and have fun. Camp Wannaklot is a week-long summer camp for children with hemophilia in Georgia. To learn more, follow this link: http://www.hog.org/camp/