Cazandra Campos-MacDonald

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?

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 [email protected]…[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 your…[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 needs…[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 not…[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?