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Cazandra Campos-MacDonald started the topic Private Forums in the forum Welcome 1 month ago
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]
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Cazandra Campos-MacDonald started the topic Staying Physically Active in the forum Living with Hemophilia 1 month, 3 weeks ago
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?
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Cazandra Campos-MacDonald started the topic Travel Season and a Bleeding Disorder in the forum Living with Hemophilia 1 month, 4 weeks ago
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?
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Cazandra Campos-MacDonald started the topic Women with a Bleeding Disorder…How Do You Know? in the forum Women with Hemophilia 2 months ago
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?
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Cazandra Campos-MacDonald started the topic Healing From a Bleed with RICE in the forum Living with Hemophilia 2 months, 1 week ago
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]
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Cazandra Campos-MacDonald started the topic Dental Health and Bleeding Disorders in the forum Living with Hemophilia 2 months, 3 weeks ago
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?
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Cazandra Campos-MacDonald started the topic Bleeding Disorder Camp is Almost Here! in the forum Parents and Caregivers 2 months, 4 weeks ago
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?
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Cazandra Campos-MacDonald started the topic Bleeding Disorder Families and Balance…When Siblings Feel Left Out in the forum Parents and Caregivers 3 months ago
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]
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Cazandra Campos-MacDonald started the topic Inhibitors and Numbers…Do They Matter? in the forum Inhibitors 3 months, 1 week ago
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]
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Cazandra Campos-MacDonald started the topic Caregiver Trauma in the forum Parents and Caregivers 3 months, 2 weeks ago
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?
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Cazandra Campos-MacDonald started the topic Community Stories: The Hemophilia Holocaust in the forum Living with Hemophilia 3 months, 2 weeks ago
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?
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Cazandra Campos-MacDonald started the topic Missing Out in the forum Living with Hemophilia 3 months, 3 weeks ago
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?
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Cazandra Campos-MacDonald started the topic When Hemophilia Feels Like a Full-Time Job in the forum Living with Hemophilia 3 months, 3 weeks ago
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?
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Cazandra Campos-MacDonald started the topic Long Distances Between Home and the HTC May Bring Challenges in the forum Living with Hemophilia 3 months, 4 weeks ago
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 a…[Read more]
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Cazandra Campos-MacDonald started the topic World Hemophilia Day in the forum Living with Hemophilia 4 months ago
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 you…[Read more]
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Cazandra Campos-MacDonald started the topic Movies and Television in the forum Living with Hemophilia 4 months ago
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, movie,…[Read more]
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Cazandra Campos-MacDonald started the topic What Should You Consider? in the forum Living with Hemophilia 4 months ago
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?
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Cazandra Campos-MacDonald started the topic Pain and Hemophilia in the forum Living with Hemophilia 4 months, 1 week ago
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?
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Cazandra Campos-MacDonald started the topic Welcome to Holland in the forum Parents and Caregivers 4 months, 1 week ago
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?
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Cazandra Campos-MacDonald started the topic The Struggles of Caregiving in the forum Parents and Caregivers 4 months, 1 week ago
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?
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