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Cazandra Campos-MacDonald posted a new activity comment 1 month, 3 weeks ago
Hi Bea,
Welcome to our forum. I see you are a healthcare professional. May I ask about your role in the healthcare field? -
Cazandra Campos-MacDonald posted a new activity comment 1 month, 3 weeks ago
Hi Kevin,
I am glad you have joined the forums! I look forward to chatting soon.
-Cazandra -
Cazandra Campos-MacDonald posted a new activity comment 1 month, 3 weeks ago
Hi Pritpal, Welcome to the forums! I look forward to chatting with you 🙂
-Cazandra -
Cazandra Campos-MacDonald replied to the topic A new class of hemophilia drugs. in the forum Hemophilia Treatment 6 months, 2 weeks ago
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 🙂
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Cazandra Campos-MacDonald started the topic Gene Therapy in the forum Hemophilia Treatment 6 months, 2 weeks ago
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?
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Cazandra Campos-MacDonald replied to the topic A new class of hemophilia drugs. in the forum Hemophilia Treatment 6 months, 3 weeks ago
Milos, I’m doing some research and will get back to you soon 🙂
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Cazandra Campos-MacDonald replied to the topic A new class of hemophilia drugs. in the forum Hemophilia Treatment 6 months, 3 weeks ago
Hi Milos, May I ask which drug you are referring to? Are you talking about the recent news regarding gene therapy?
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Cazandra Campos-MacDonald started the topic Conditional Approval for Gene Therapy in the forum Hemophilia Treatment 6 months, 4 weeks ago
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?
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Cazandra Campos-MacDonald started the topic Private Forums in the forum Welcome 8 months, 2 weeks 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 9 months 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 9 months, 1 week 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 9 months, 2 weeks 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 9 months, 3 weeks 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 10 months 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 10 months, 1 week 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 10 months, 2 weeks 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 10 months, 3 weeks 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 11 months 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 11 months 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 11 months, 1 week 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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