I Spoke Too Soon

So, last night the Running Room called to let me know that they cancelled my walking clinic. I was so disappointed I almost cried on the phone. He suggested I take a running class but as you know, running is not recommended for Hemophiliacs. I am so discouraged. That is all.

Marathon

So, I just signed up for a 10-week training program through the Running Room. I will be going once a week for training sessions and group walks. After 10 weeks I should be able to walk 10km. The end goal is to walk in the Canadian Breast Cancer Foundation CIBC Run for the Cure. I think the fact that it is for a charity will really motivate me and keep me going. I am also practicing for next year because we are in the process of planning a Hemophilia Walk. I'm looking forward to training I think exercise will be a great stress reliever and it will help me get in better shape. I've always been one of those people that has a hard time sticking to things but I'm praying this will not be one of them! Wish me luck!

Hemaware Article

So, Hemaware recently wrote a wonderful article about how the internet is making it easy for Hemophiliacs to keep in contact, learn about new treatments and provide emotional support. I was happy to do the interview and very glad to see that my blog is doing some good!

Susan Scroggins didn’t know which was worse: that both her children had been diagnosed with type 1 von Willebrand disease (VWD), or the dearth of support and information for families living with VWD in her area. It was December 2010, and she had just spent the past several weeks watching her 12-year-old son and 13-year-old daughter bleed uncontrollably after having their tonsils removed. When Scroggins was not at work or caring for them, she fretfully combed the Internet for any nugget of information that could soothe her anxieties. She wondered if her son could still play sports and whether her daughter could still attend church camp. Overall, she wondered if her children could lead normal lives.

“I was looking for anything that would say, ‘This is the best physician to treat the disease, this is who you can call with a question or if you just need a shoulder to lean on, and here are some other people dealing with the same thing nearby,’” says Scroggins, 40, of Center Ridge, Arkansas. On New Year’s Eve 2010, she typed this first entry in her new blog, vWD in Arkansas:

Not much time, but wanted to feel like I was making some sort of progress in my attempt to make sense of this craziness I call life right now. The gist of it is that we’re a simple country family living a complex life right now. The recent diagnosis of von Willebrand Disease in R and D make things even more complicated.



The blog was intended to be Scroggins’ personal therapy and a way to share information she came across. She opened a Twitter account on New Year’s Day and posted her first entry. Two hours later, a young woman from Maryland who had VWD requested to follow her on Twitter. Scroggins was amazed at the quick response. Through their conversations, the woman gave Scroggins a host of information about support programs and treatment options to ask her hemophilia treatment center (HTC) about.





Blue Jean Images/Glow ImagesIndividual blogs, discussion forums, Twitter, Facebook and YouTube are increasingly becoming the primary link connecting members of the bleeding disorders community. The upward trend in social media usage reflects what’s going on in the general population. A survey of more than 5,000 Americans found that nearly one-fourth are active on a social networking site and 7% are blogging, according to a November 2009 study in the Journal of Medical Internet Research. These online resources function like a virtual support group for people with bleeding disorders—only better. When Scroggins has a question, even if it’s in the middle of the night, all she has to do is log on.



Support in Real Time

A YouTube search on “hemophilia” pulls up nearly 1,200 videos, uploaded over the past four years. Most of them are personal stories; others are educational videos or homemade public service announcements soliciting political and financial support. The most-viewed videos have been played more than 100,000 times.



Discussion forums are generally hosted by a particular organization. Inhibitorsupport.org, hosted by the Haemophilia Society of the United Kingdom, is for people with hemophilia and inhibitors. Los-bleedos.net, hosted by the Danish Haemophilia Society, is for young people with bleeding disorders worldwide. Topics address the effect of bleeding disorders on anything from scuba diving to intimate relationships. Members can remain anonymous or, as with social networking sites, create profiles.



National Hemophilia Foundation (NHF) chapters are boosting their social media presence to educate and keep funders engaged. This year the Colorado Chapter launched a weekly blog, a Facebook cause page, and Twitter and YouTube accounts. “This will never replace one-on-one interaction, but it’s an entry point,” explains the chapter’s executive director, Emily Davis, MNM. “We have to let them know what’s going on in our organization.” To find out if your chapter is active on Twitter, look on its Web site or do a Web search for the chapter’s name and the term “Twitter.”



On Facebook, more than 4,600 people “like” NHF and receive regular updates on events and HemAware articles. NHF has more than 900 people and organizations following it on Twitter. Followers receive links notifying them of NHF events, HemAware articles and other online articles about the latest research and treatment, and about people living with bleeding disorders. NHF also retweets many of its followers’ blog posts, photos and comments about hemophilia and VWD. Since hemaware.org was launched in March 2010, NHF has started three blogs on the site, all written by people living with bleeding disorders. (See “HemAware Bloggers.”)



Scroggins began following the HemAware blogs and several others soon after she started her own. “They understand. They’ve been there,” Scroggins says. “If I hadn’t found these people online, I’d probably be bald from the stress.”



Within three months of creating her blog, Scroggins had nearly 70 Twitter followers. She posts a new blog entry about every five to 10 days chronicling her family’s journey. She has posted on the sleepless nights, the frequent hematology appointments, and the anxiety and helplessness she sometimes feels watching her kids go through the challenges of having a bleeding disorder. A recent entry contained a poem about a pair of painful shoes that no one can relate to unless you walk in them, a metaphor about life with a bleeding disorder. Scroggins found the poem in a post by Ryan Rotenberry, LPN, 42, a blogger she considers a buddy, though they’ve never spoken.



From Needing Help to Giving It

Before blogging for HemAware, Rotenberry, of Forestville, New York, began a blog called Hemo Hijinks, after having similiar feelings of isolation that motivated Scroggins to blog. Working as a nurse, he often had to call in sick because of bleeds from moderate hemophilia A. Eventually, Rotenberry’s bleeds became so frequent he had to take disability leave.



Knowing no one else in his community with a bleeding disorder, Rotenberry looked for support online. His first stop was mybloodbrothers.com, a social networking site that recently migrated to a Facebook page. There, he met a woman who pointed him to resources that could help with insurance co-payments, out-of-pocket medical expenses and legal issues related to disability. The two remain close friends. Rotenberry also met Matt Stinger. Though they were 15 years apart in age, they related to each other as nurses with hemophilia. Stinger has severe hemophilia A. “I was having bleeds at work, too, having to call off sick or stop working,” says Stinger, a nurse at a pediatric emergency department in Philadelphia. “We were able to support each other through all that.”



Rotenberry’s and Stinger’s friendship progressed to Facebook and Twitter and then to texting each other. “Matt was supportive during a time when my employer wasn’t and nonhemophilia friends had a hard time understanding,” Rotenberry says. In November 2010, they met face-to-face in New York City. “He’s like my little brother from another mother,” he says.



As Rotenberry continued to blog and tweet about his experiences, he noticed a shift. Parents of newly diagnosed children and older children with bleeding disorders, as well as adults, began coming to him online, desperate for guidance. “I realized that my place in this community is not what I thought it was,” Rotenberry says. “I came looking for support, but now I’m more of a mentor.” Since launching the Hemo Hijinks blog in October 2010, Rotenberry’s attracted 391 regular followers to his two Twitter accounts. Of the 500 friends he has on Facebook, he estimates that about one-fifth are dealing with bleeding disorders. In February 2011, Rotenberry was invited to launch InFuzed, a spinoff of the Hemo Hijinks blog, on the HemAware Web site.



Friends, Followers and Foes

Although Rotenberry shares his experiences living with a bleeding disorder, he agrees with NHF’s warning statement that people should not take social media information as medical advice. “I’m not your doctor, and I’m not there treating you at that moment,” Rotenberry says. “What works for one person may not work for everyone else.” Any medical information or treatment advice found online should first be discussed with your HTC staff or physician.



NHF also warns social media users to be cautious of the personal medical information they divulge online. Users should update their Facebook privacy settings so only their friends can view their page. They should consider anything that is posted to be public information, meaning any search of their name could reveal social media and blog postings. Insurers, employers, colleagues and others could potentially use this information to discriminate or exploit.



After answering an ostensibly innocent Facebook request, Rotenberry found that his personal information was being used by a salesperson to harass people for sales. “Don’t just assume that because they claim to be in the bleeding disorders community they should be your friend,” Rotenberry says. Further, be selective about what you share. (See “Learn More.”)



Connecting for a Cause

Social media can also be an extension of the connection people make at hemophilia summer camps, NHF’s Annual Meetings and chapter events. Anthony Romeo, 27, an actor in New York City with moderate hemophilia A, was planning to attend NHF’s Annual Meeting in November 2010 in New Orleans. Instead, he wound up at a local hospital after he sustained a head injury. “If you ever wanna feel unimportant, just go to the ER... seriously. Still here. Waiting... Grr. Argh,” he tweeted from the waiting room.



Instantly, responses came in from people at the conference, empathizing with him and updating him on what was happening. “As people with bleeding disorders, we are a small community, and we have to make our voices heard, but we haven’t had a venue to do that,” Romeo says. “Social media has enabled it.” He regularly tweets Rotenberry and Stinger.



Social networking is especially helpful for people who live in small towns or rural areas. Romeo grew up in rural Pennsylvania, 45 minutes from Scranton and an hour bus ride from his elementary school. Few of his classmates or neighbors understood his bleeding disorder or knew why he wore protective padding and a helmet. Today, families in rural communities can use social networking to connect with people who understand. They now have unprecedented access to treatment information that often took longer to trickle into smaller towns.



Social media has also allowed awareness of bleeding disorders to go global. Ryanne Radford, 28, of Calgary, Alberta, Canada, started her blog, Hemophilia Is for Girls, to raise awareness about the unique struggles of women with bleeding disorders. Radford has severe factor V deficiency, an extremely rare bleeding disorder with fewer than 200 known cases worldwide. A few months after the blog’s launch in February 2010, Radford began receiving messages from people around the world, including this one from a young man in India with severe hemophilia A:



…I have a family history of hemophilia and throughout my life it has caused me many problems. The medicine used to treat a bleeding episode is very expensive and hard to get. The Hemophilia Treatment Centre is far away and is hard for me to get to. I would love to improve my quality of life and would like to do so by opening my own business.



Radford receives similar messages from 15 Indian Facebook friends and Twitter followers. Their plight moved her to use her blog and Twitter postings to start a fundraising campaign for their medical expenses.

The shared feelings of empathy and responsibility are prompting more NHF chapters and individuals with bleeding disorders to form virtual bonds with people in other states, communities and even countries. In the digital age, physical distance is irrelevant. Understanding and helping are what count. Radford casually talks about her Indian blog readers and Twitter followers as if they had just spent time together. “I’ve never met my friends in India, but I think this cause has become close to my heart because I ‘talk’ to them every day.”

http://www.hemaware.org/story/digital-connections

Good Night Sweet Prince

So, today marks one year since Charlie has passed away. I have had many one year milestones in my life. One year anniversary, one year without a bleed, but this one year mark makes me depressed. I miss Charlie every day. The fact that hes been gone for a year makes me feel like I need to do something or something has to happen for me to remember him or hang on to him. The hardest part for me to accept is that there is nothing I can do about it. I sent my mom flowers to let her know I was thinking of her but I know it will never be enough to make up for the fact that she lost her best friend. I have received a lot of support today, my wonderful co worker Danielle bought me flowers and a little teddy bear and a beautiful card. It was such a beautiful thing for her to do and it made me feel a lot better. My friends Cheryl and Kim came out for supper with me and gave me a card and a big bouquet of flowers It really helped me take my mind off of it and it helped to know that they cared so much and that they loved Charlie too. I was overwhelmed with how thoughtful and caring my friends are. Zane took me out for supper and listened to me cry for about the one millionth time since Charlie passed away.The more I thought about Charlie all day the more I thought about how he always did what he wanted to do. He ate what he wanted, drank what he wanted and he worked hard and played hard. We are almost complete opposites in that respect as I spend almost all my time watching what I eat, drink and do. I think having someone like Charlie in my life helped me see the importance of having fun and throwing caution to the wind. At the end of the day I know I should be happy that I had 20 years with one of the nicest, thoughtful caring people I have ever met, but a part of me just wants to have him back.

The Royal Couple in Calgary!

So, as you may know the Duke and Duchess of Cambridge William and Kate are going to be in Calgary July 7th and 8th. As you may know, the Royal Family has a family history of Hemophilia. Ever since I heard they were coming I prayed there was some way I could meet them and talk to them about Hemophilia but it seems to be nearly impossible to book an appointment with William and Kate. While they are in Calgary I would be lucky to even lay eyes on them. It would be an honour to meet them but my reasoning for wanting to meet them so badly is they fact that they have so much influence in the world and could do so much for Hemophilia Care around the world! I have this wonderful pair of people in my sights because they have a family history of Hemophilia, although it is way way way back in their history I hope they have some compassion for this cause. Besides the link to Hemophilia I think they are just an absolutely beautiful couple and I just loved watching their wedding. I have it taped and sometimes watch it if I am feeling sad. I remember my mom telling me about how she loved watching Princess Diana get married and I glad I got to watch my very own princess get married in my lifetime.
Either way I will keep on dreaming big when it comes to helping others living with Hemophilia. In the meantime if you see William and Kate please tell them I would love to meet with them to discuss Hemophilia Care.

The Happy Former Hintonite!

So, I spent the long weekend in Hinton, Alberta. Hinton is just a few hours away from Calgary so we decided to head out there to visit with Zane's family. Zane and I lived in Hinton for three years before moving to Calgary and I must say going back there is a lot like going back home. The people are kind and friendly and the scenery is just beautiful. We arrived on Friday July 1st, just in time for Hinton's Fohn Festival, a multicultural Canada Celebration with food, fun and entertainment. I got to see some old friends and made a few new ones. It was so nice catching up with everyone and so good to see how the Fohn Festival has grown over the years as I was in Hinton for the very one. I was also very proud to see the new Hinton Voice, started up by some of my friends and former co workers.
We took the park way back to Calgary through Jasper National Park and Banff National Park and saw some of the most beautiful mountains in the world as well as bears and goats.
While were were in Hinton we got to spend some quality time with Zane's Dad, Step mom and two little sisters, they are so kind and welcoming to me that sometimes I honestly forget that they are Zane's family and not mine.
We are now safe and sound in Calgary and although it is nice to be back in the big city its nice to know we can also head back to Hinton anytime where we have so many good friends and wonderful memories.

O Canada!

So, tomorrow is Canada Day. I think as Canadians we appreciate our country. I have never really thought about it very much to be honest. As a child I loved Canada day because we would get a day off and get to watch fireworks. But as an adult I realize that being Canadian means much more to me than just a holiday. Being an Hemophiliac, being a Canadian means that I have FREE access to some of the best treatment in the world. I truly believe that if I were born in any other country I would not have the quality of life I have today. At the moment I can go to the hospital anytime night or day and not have to think about how much it will cost. I can’t imagine having to pick between health care or a mortgage payment, or worse yet, not even having access to treatment in the first place. In some countries Hemophiliacs do not have enough money to pay for their treatment and thus have to continue bleeding until it eventually stops on its own. This practice is very painful and can cause long term muscle, nerve and joint damage. In some countries patients can’t even afford the cost of transportation to a Hemophilia Treatment Centre and when they get there the centre may not even have product available for them an if they do the patients often can’t afford it. The fact that this is going on in the world breaks my heart. It truly bothers me that I while other Hemophiliacs are sitting in their homes slowly bleeding internally praying for it stop. In my mind this just shouldn’t be. I’ve mentioned this program before and I can’t stress enough how important it is for us to donate to things like this. Check out Save One Life http://www.saveonelife.net/ a program dedicated to helping people with Hemophilia. Wherever you are from there is always someone else in the world who could use a helping hand so while your celebrating Canada Day on July 1^st or the 4^th of July in the US take a minute to click on Save One Life and help someone with Hemophilia today!