A place for moms and other family members to discuss hemophilia.
It is so great to see all you you wonderful committed moms today! May you always feel welcome to share your stories with us!
i have to say that i am really sad that i didnt come to the annual meeting. i told my husband that i would really like to try to go next year.
I'm hoping to make it next year as well. I'm really disappointed that I'm not there right now... Please share some of the things they went over in Denver on the blog for those of us who are missing out!
This was my first conference. I really enjoyed meeting all you moms at the breakfast and hearing your stories. Thanks for sharing.
Hey Girls, Denver was great and it was so nice to finally meet you all in person! PS. We got Reece's Inhibitor test back yesterday and he does NOT have one. Just a very low half life....whew!
It was so nice to meet all of you. I can't remember who said it but, someone brought up a goodpoint about the fathers feelings. I never really considered how my son father nust be feeling and that he may have a need to greive. My son is now 7 yrs old just about the time when father son sports would kick in, so I guess it makes more sense now.
I stumbled on this site through WebMD. I wanted to leave some information about a wonderful new product to stop bleeding fast! A company called HemCon Medical Technologies in Portland, OR manafactures hemmorage controlling bandages called Kyto Stat, you can get them through drugstore.com. I recently had two biopsies and the bandages worked wonderfully. HemCon is also working on getting a distributor for Seal on Nasal Plugs that stop problem nosebleeds fast! I don't have a child with hemophilia but when I saw the site I just had to pass the information on. If you have any questions you can reach me at firstname.lastname@example.org. Thanks!
It was so nice to meet all of you in Denver. We all have so many issues we could set and talk about. Stay strong and lets all stay in touch.DeAnn
Hello,Like to have a new disscusion about being prepaired for the holidays. I have noticed that the holidays are when we tend to have more bleeding issues. I think it is somthing about the added stress of family and large gatherings. I have learned that I always have to have an emergency bag ready. One in the car one in my closet, and one in daddy's car. Also we have to have a plan like if somthing happens who will take Raymond to the ER and who will take care of the other kids. We almost always take 2 cars to the family's house "just in case". We also have a medicalert sticker on the car as well as his medicalert necklace. The emergency bag in the car also has a written instruction sheet for how to reconstitute factor and administer it. Also we have to remember that there are certain foods that can contribute to bleeding issues such as garlic, and ginger. Anyway these are just some of the things that we have come across. I hope it helps. :)
I have never heard that certain foods contribute to bleeding!
Actually your hemotologist should have a list of herbal supliments and foods that can hinder cloting.If not I would not mind scanning the document I have and emailing it to you.
Sarah, I come from generations of hemophilia and have not heard of that food can effect the clotting of blood and hinder the hemophilia, can you please give me the source you have regarding this so I can also follow up on it, remember everyone if you have questions regarding this matter please check with your hemotologist first before trying something new , have a great day
I would love to send you the paper I have that I got from our HTC. It is a copy of an article I belive it was in hemaware. I don't think I could place a copy on this site but if any of you would like to email me at email@example.com I can attach the document and send it to you
i have heard that there are certain herbal supplements and such that our little hemos shouldn't take because it can mess with their clotting.
I am wondering if I can reach Yolanda. I met you at the conference... I live in Melbourne. I am going to be attending the Holiday Walk for Bleeding Disorders this Saturday in Winter Park with my husband & son. Would love to see you again and introduce you to the rest of my family.
Yolanda, I forgot to leave you my email address so you can get in touch with firstname.lastname@example.org
HOW CAN I GET INVOLVED WITH THINGS LIKE THIS? I WOULD LOVE TO GO
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