Hi Milos,
I have reached out to a few clinicians about your question, and they have no information to share. I will keep my ears open and ask that you do the same.

Thank you!! Have a great week, Milos 🙂

Gene therapy is a hot topic with many questions to be answered. Columnist Jennifer Lynne writes about the questions she has about gene therapy and hemophilia B.

 

If gene therapy is a possibility, what questions do you have? What would help you investigate a treatment?

Milos, I’m doing some research and will get back to you soon 🙂

Hi Milos, May I ask which drug you are referring to? Are you talking about the recent news regarding gene therapy?

This is huge news for the bleeding disorder community! See the link below.

https://hemophilianewstoday.com/news/roctavian-hem-a-gene-therapy-given-conditional-approval-eu/

 

What do you think?

Hello to all! I am Caz, your forum moderator. You may have noticed that a few of our forums are now “private.” This means that only those registered to participate in the forums will have access. It is our hope that enabling this level of privacy will encourage more participation.

If you have any questions, please send me an email at … Read more

Physical activity is important for overall health. The summer months allow for more activities outside. Before starting a new physical workout, contact your HTC.

 

What activities do you enjoy that work well with your bleeding disorder? Are there activities that have been more difficult?

Even with gas prices skyrocketing, many are planning road trips. Living with a bleeding disorder means there are extra supplies that must accompany you on the trip.

 

What are the must-have items you travel with to ensure your safety?

Too often women spend a lifetime thinking they are a “heavy bleeder” without help from a physician. Today, women are more empowered to speak up, ask questions, and work to find a diagnosis.

 

What prompted you to work toward a diagnosis? What advice would you give to a woman considering working to find a diagnosis?

One of the most common methods to help that serves as the first step in the treatment of many types of injuries is RICE (Rest, Ice, Compression, Elevation).

 

Has RICE been a method that has kept you from participating in an event or outing? Is it your first method of treatment after an injury (after treating with factor, and/or… Read more

Flossing and brushing regularly are key to good oral health. Alerting the dentist of your condition is critical, especially for an invasive procedure.

 

Have you had complications with dental procedures as a result of your bleeding disorder? What advice can you give to those living with a bleeding disorder about dental health?

The pandemic caused summer bleeding disorder camps to cancel. Many will host their first camp since the beginning of the pandemic this summer.

 

Will your child be attending camp this season? What concerns do you have with the return to camp? How has not having camp affected your child?

Parenting is not easy. Throw in a chronic disorder and it gets even more difficult. When one child has hemophilia and their siblings do not, sibling rivalry can reach high levels.

How do you help the unaffected siblings relate to their sibling with a bleeding disorder? What tips would you share with families who are working to balance the… Read more

Having an untraceable inhibitor titer is the ideal result for those living with an inhibitor. With a new treatment that has made life much easier for many, achieving a zero titer may not have as much importance.

 

Is tolerization important in your inhibitor journey? If so, what keeps you moving toward reaching your goal? If you are… Read more

Caring for a loved one with a bleeding disorder can be a full-time job. Being a caregiver can be stressful and may even change the relationship between caregiver and loved one.

What are some ways caregivers can step back, even if only for a moment, to gain a new perspective on their role? What is your biggest struggle as a caregiver?

The Hemophilia Holocaust in the 1980s devastated the bleeding disorder community. The grief and loss are still felt today. Fortunately, there are many who were never personally affected by the tragedy. 

What are the stories we need to share with the community so we never forget the horrors of this time? Why is this so important?

When living with a bleeding disorder the best laid out plans can quickly change. From leaving for vacation to picture day at school, a bleed can interrupt the day.

Do you have a story to share about missing out on something that was upsetting to miss?

When living with hemophilia, there are seasons when the disorder takes center stage; sometimes for long periods of time.

What makes living with hemophilia feel like a “full-time job?”  What are some ways to help ease the burden of being overwhelmed? 

When living with a rare bleeding disorder, having access to medical care is important.  Living in close proximity to the Hemophilia Treatment Center (or provider) is ideal, but not everyone is able to have this luxury.

If you live a long distance from your provider, what are your biggest concerns in getting the care you need? Do you have… Read more

Living with a bleeding disorder in the United States is much different than in other parts of the world. Columnist, Jennifer Lynne, writes about World Hemophilia Day and encourages readers to take action and advocate.

What are some ways you advocate for bleeding disorders? Do special days such as World Hemophilia Day (April 17th) encourage… Read more

Hemophilia is not a common disorder that the public hears about in movies or on television. But, when it is discussed, sometimes the writers get it all wrong.

Have you heard “hemophilia” used in movies or on television and the details were completely inaccurate? Are there any shows where hemophilia is depicted correctly? Is there a show,… Read more

The hemophilia marketplace is filled with a variety of products that help individuals with hemophilia to manage bleeding episodes. Choosing and changing products can be filled with uncertainty.

What are the most important pieces of information a person should consider when choosing a factor product? 

Many with hemophilia suffer the long-lasting effects of joint bleeds by living with chronic pain.

What are your methods of pain management that prove to help? What advice do you have to share with those who are in pain?

Emily Perl Kingsley wrote a beautiful essay, Welcome to Holland, that describes her journey of raising a child with special needs. It is a piece that many in the bleeding disorder appreciate.

Are there poems, books, or song lyrics that help you on the journey of raising a child with a bleeding disorder?

Caring for someone with a bleeding disorder can often be overwhelming. Sometimes it seems like things will never get better.

In the times when hemophilia is all-encompassing, how do you take care of yourself? Do you have suggestions for caregivers who are overwhelmed and exhausted?

The pandemic prompted medical providers to offer telehealth services.

Have you participated in telehealth services for the treatment of a bleeding disorder? If so, were there any problems communicating via the internet? What advice do you have for someone meeting virtually with their physician?

Infusing does not always happen in the clinic or at home. The beauty of self-infusions is that a person can infuse whenever and wherever needed.

Where is the strangest place (physical location) you have infused? How did you adapt to the situation to make sure the infusion went well?

Having a support system is critical when living with a rare condition. Columnist Alliah Czarielle writes of the friends in her life that are helpful and understanding.

If you have a strong support system of friends, what are the traits that make them especially supportive?

Physical therapy is often used to help people regain mobility, strength, and range of motion in limbs that have sustained damage from recurring bleeding. Margarida Maia PhD, reports on a recent study that shows how foam rolling resulted in an improvement of joint health.

 

Have you worked with a physical therapist? If so, did the… Read more

Having a support system when living with hemophilia is something that is treasured. Yet sometimes it is hard to find connections when living with a rare condition.

How have you developed your support system? Who are the key people in your group who help you manage life with a bleeding disorder? Do you have suggestions for those looking… Read more

Chapters across the country hold annual camps for kids with bleeding disorders (some even invite siblings). The season to fill out camper registrations is coming soon.

If your child has attended a bleeding disorder camp, what kind of experience did they have? What is the most important thing to remember as a parent considering sending… Read more

Parenting is challenging. Over time, parents learn to handle issues with their children the best way possible. Columnist, Joe MacDonald, writes of a recent trip to the emergency room with his son. Joe takes the reader through his thought process as he begins to doubt his parenting.

Have you ever doubted your ability to parent your child… Read more

People with hemophilia have more options regarding the product they use compared to ten and twenty years ago. New products do not work for everyone, but when they do, life can change dramatically.

If you have changed to a different product or treatment plan and your quality of life has improved, what excites you? Are you more active? Are… Read more

Living with a chronic condition can be lonely and isolating. Columnist, Jennifer Lynne, writes of how the pandemic strengthened her connections to the bleeding disorder community.

Have you benefitted from virtual programming during the pandemic? If so, is there a piece of information or a connection made that has proven beneficial during… Read more

Hi Jennifer, Thank you for your response. I did not mean that all with a mild diagnosis have the same experience as each other. I am speaking of those in the mild population who rarely bleed. It is easy for these individuals to not give their hemophilia a second thought until a serious emergency is upon them. Complacency is dangerous, and as… Read more

Educating yourself on inhibitor treatment and complications is important.

What resources do you find most useful regarding inhibitors? What piece of information transformed the way you think about living with an inhibitor?

Most people evaluate their 504 plan at the beginning of each school year. It is important to update 504 Plans when a change in care is made with your provider. Don’t forget to update your plan so school officials and teachers can make the necessary modifications (even if it is the middle of the school year).

If you have a 504 Plan,… Read more

The weather is beginning to change which allows for more outdoor activities.

How do you stay physically fit? If you do not have a physical fitness routine, what are some activities you are planning to jump-start your fitness journey?

Many in the bleeding disorder community live with chronic pain from damaged joints. From R.I.C.E. therapy to medical cannabis, there are numerous pain management methods.

What methods of pain management help control your pain? Is there one method that you rely on more heavily than others? How do you describe your pain?

Does treating at least once a week on a regular basis help manage your bleeding? Some prefer treating on-demand.

If you are on prophylaxis, how often do you treat? How do you determine if you need an additional dose of factor before an event that is physically challenging? If you treat on-demand, what makes this method more successful for… Read more

Sometimes we relax to the point that we neglect the care of our bleeding disorder. Becoming complacent in the care of your bleeding disorder can easily cause you to get off a regulating schedule of infusing/administering medication.

Would you share a time in your treatment, where you relaxed so much in your treatment, that a problem… Read more