Thursday, February 5, 2015

Community Connections Blog

Hello!

Welcome to the BDAI Community Connections blog page!  The goal of this blog is to allow community member to ask questions or discuss concerns, and for experienced community members to help answer these questions and share their experiences.  We know finding out that you or a loved one has a bleeding disorder can be a scary thing, but we have also learned is that one of the best resources the bleeding disorders community has is each other.  

With this blog community members can write in to ask questions or discuss a concern they may have, and be connected with someone who has been in their shoes.  So, if you are a parent, caregiver, or person with a bleeding disorder who is new to the community or facing new experiences, please post any questions or concerns you may have.  On the flip-side of that, those who are experienced community members and are willing to give advice or share personal stories with these families, please respond to these posts and share your knowledge!  With your participation, we can build a stronger community for those people with bleeding disorders and their families.

*All posting can be done anonymously by simply clicking the drop down box entitled "Comment As" and selecting the anonymous tab.  


(Note:  Any personal information shared is at the discretion of the poster.  BDAI does not assume responsibility for information shared or advice given.  This forum is intended to allow community members to share information and experiences with one another.)

18 comments:

  1. To ask a question, click the "Add a Comment" button below!

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    1. To answer a question, click the "Reply" button below the question!

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  2. This is exciting!

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  3. Does anyone read this Community Blog? We live out near Joliet and our son is almost 9mo old (severe A). Are there any other parents with little ones in the area?

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    1. Not a parent but have severe hemophilia Factor VIII. Do you have a question(s)?

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  4. We haven't had any new questions in awhile, so if you have anything you would like to ask the bleeding disorders community or the BDAI Staff please post it here! Don't be shy! New questions or stories shared are appreciated :)

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  5. I worry about inhibitors? My son is with Severe Hemo A... I also worry about becoming a helicopter mom, I findmyself staying right by his side at the park... but I feel its bette to be safe, any advice or experiences?

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  6. I am long-time community member but have not been checking this blog frequently enough. Apologies for the delay. The general understanding is that inhibitors develop, in most cases, in the early days of a hemophiliac. Indeed they are a significant concern in the community. It's also known that once your child has received a certain number of Factor infusions, the chances of developing an inhibitor reduces dramatically. Using a prophylactic regimen of Factor dosing, prescribed by your doctor, within a few month you would have already crossed that threshold. In addition, with regular infusions (on prophy) you would keep the circulating Factor level high enough that you would no longer have the need to be a 'helicopter mom'. Please post additional questions, if you have, here. I'll try to check more often. Hope this helps.

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    1. Thanks for your great response! Hopefully it helps new parents to hear from community members like yourself :)

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    2. Delighted. As your child grows it would be important to stay connected with community members by attending events hosted by BDAI, your local chapter (if not BDAI), pharma, home-care companies and your HTC. This would be a simple way to share stories and learn. The annual camp conducted by BDAI is a good way to connect with other children and get comfortable about taking better care of themselves.
      I will be travelling next week and will not be checking this site. Will look in after that. I will leave my email with the Admins if you have anything to post more privately.

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  7. Can someone with von Willebrand Disease have root canal procedures done by a endodontist in the endodontic office? Or must it be done in a hospital where Factor and Fresh Frozen Plasma are available? 'Tis a mystery!!
    Thanks.

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  8. Is PROLIA, a shot given every 6 months, to treat osteoporosis, okay for a woman with VWD type 1? Side effects seem pretty risky...http://www.webmd.com/drugs/2/drug-154218/prolia-subcutaneous/details#side-effects...What other options are there? HELP! Thanks much.

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  9. I need to increase my vitamin D levels. But when I take more than 400 I.U. every day, I get nosebleeds and bruises. It's tough to get sunlight for vitamin D in cloudy Illinois...When I take fish oil I get hives. When I take cod liver oil I swell up like a lobster and itch...Then I want to scratch...That leads to bruising and I look like an eggplant--purple!!
    So what can I do? I have VWD. thnx

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    1. I am a community member like you, a male with Hemophilia A. I take a form of Vitamin D to increase my Calcium uptake. I have taken it for 2 months now and tolerated it well. In fact, my doctor has doubled by daily dose recently and I'm still doing ok with it. I am not suggesting this for you as I am not a physician. But in your case, you might want check with your doctor about taking Calcitrol if this is not what you are already on.

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    2. Thanks for the info about Calcitrol. I take an oral Vitamin D with Calcium supplement. My D levels are still low. Also, I must monitor the calcium--because I have/get kidney stones. I get Calcium and Vitamin D from food too. I'll check out the Calcitrol with my doctor. thnx.

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  10. Hello!
    This blog has been pretty quiet recently, so we were hoping to ask you, the community, a few questions. We have noticed a new trend in the past few years of more people starting to get medic alert bracelets, which we think is GREAT! Why do you think more people have been getting them recently? And on the flip side of that, why do you think some people still do not have them? Thanks for your input!

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  11. Hi we just wanted to see how my little guy was doing this is his first year at camp . We got a call from Adam which was comforting.

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