April 2020

Have you heard? BleedingDisorders.com is all new

This is a paid public announcement from Takeda and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to a Takeda website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.

As part of Takeda’s continuous efforts to support the bleeding disorders community, BleedingDisorders.com has been fully updated. It is now your go-to destination for information, tools, and support for living with a bleeding disorder. Whether you’re a patient or caregiver, the new and improved website provides valuable information for everyone.

New content with a fresh look
BleedingDisorders.com now lives and breathes Takeda’s mission—to put patients at the center of everything they do. Part of the purpose of this redesign was to bring together a wealth of bleeding disorders information while making it easy to find. You can now explore disease education, disease management, important life milestones, and information on physical and emotional wellness. The best part is that there are resources for people with hemophilia A, hemophilia B, hemophilia with inhibitors, von Willebrand disease (VWD), and other factor deficiencies.

Something you haven’t seen before
When you take a deeper dive, you’ll find the Living Well section has brand-new lifestyle information, ranging from diet, exercise, and travel tips to emotional health and pain management advice. These resources aim to help you live an active and healthy lifestyle while managing your bleeding disorder. Search a little further, and you will also discover new doctor discussion guides for talking with your healthcare provider about hemophilia, inhibitors, or VWD.

We’re in this together
With the relaunch of the website, Takeda wants to help you engage with other people living with a bleeding disorder. The Get Involved page has a community events calendar, links to connect on social media, and a place to sign up for updates directly from Takeda. Explore the Bleeding Disorders Community on Facebook, Instagram, and YouTube to stay up-to-date on the latest news, communicate with others, and share your story. Whether you’re experiencing a new diagnosis, managing treatment for the first time, or advocating for accommodations in the workplace, your story can be insightful to someone else in the bleeding disorders community.

BleedingDisorders.com makes it easier than ever to stay informed and proactive in managing life with a bleeding disorder. Discover what the new website has to offer, and you’ll be one step closer to making today brilliant!

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Copyright ©2020 Takeda Pharmaceutical Company Limited, 300 Shire Way, Lexington, MA 02421. 1-800-828-2088. All rights reserved. TAKEDA and the TAKEDA logo are trademarks or registered trademarks of Takeda Pharmaceutical Company Limited.

US-NON-0595v1.0 04/20

Failure to Plan is a Plan to Fail

Michael Joshua

I’m so excited that the time has finally come for me to be in college, on my own, making my own decisions without direct input from my mom. However, I can still hear her advice even when she is not around. 

  1. Contact campus emergency, not 911.  The officer on duty was able to access my emergency plan.  She called an ambulance and provided me with a taxi voucher to return to campus once I was discharged from the hospital.  I left the campus via ambulance at 1:00 am.
  2. My hematologist spoke directly to hospital personnel in the emergency room and they were expecting my arrival. Unfortunately, the medical staff was not very familiar with hemophilia.  However, I remembered my mom always stressed the importance of me being knowledgeable enough about my diagnosis to be an advocate for myself. I was able to instruct the nurse on how to mix and infuse the factor.  The nurse had orders for an x-ray and to draw factor levels.  I remember a situation when I was younger that the ER staff wanted to draw factor levels and my mom refused.  I agreed to the x-ray.  I expressed to the nurse that I infused on a prophylactic schedule and checking levels immediately following that type of trauma was not necessary.  They also wanted to keep me overnight for observation.  I did not want to stay overnight at a hospital for a toe injury so I told the nurse that 24-hour observation was not necessary and I would be willing to sign anything she needed refusing their recommended treatment.  It felt so empowering to make a decision alone about my treatment.
  3. I was discharged from the ER and returned back to campus at 3:08 am.  When I called my mom couldn’t believe that I had been transported to the ER via ambulance, treated and returned back to campus in two hours.  Modified attendance is part of my academic accommodation so before I went to sleep, I emailed my instructors to inform them that I would not be in class the next week.  The office of accessibility was also contacted because my injury resulted in difficulty walking and my dorm room is located on the 9th floor.  When I woke up it was 1:30 pm.  I was contacted by the director of food service about my meals and my meals were delivered to my room.
  4. Not only did my accessibility counselor follow up with me, but my mom informed me that because she has permission to discuss my records, she was also contacted and informed of the incident.  My counselor asked if there was anything else that could be done to assist me.

Well, I had a bleed at school that required emergency treatment.  Not only was it a school holiday but it was in the middle of the night, 12:50 am to be exact.  As I was doing some strength training in my room, I injured my toe.  The entire foot was swollen in a matter of minutes, I was in extreme pain and could hardly stand.  Of course, my first reaction was to infuse but I wasn’t able to administer hardly any of the dose (my veins kept blowing).  As I sat on my bed, I decided to call my mom.  Not for her assistance but just to let her know what was going on.  She has always said that she prefers to be in peace, not pieces.  In other words, try not to make her worry any more than she already does.  After speaking to her, I called my hematologist.  We decided that going to the emergency room was necessary.  I called my mom back and informed her of the next steps.  She reminded me of the emergency plan that was put in place during orientation with the office of accessibility.  There was nothing for me to figure out.  I just followed the plan. 

Planning ahead and having a documented emergency plan in place was well worth the effort.  The plan was followed as written and most of all, the plan worked.  This incident confirms, “I have hemophilia; hemophilia does not have me"!

Michael Joshua, age 19, is from Baton Rouge, Louisiana. He attends Loyola University of New Orleans. My major is political science; he intends to become a successful lawyer.

Happy Easter!

HemaBlog takes a break three times each year: New Year's Day, Easter and Christmas. We hope everyone is staying in, staying safe and staying hopeful during this time of the Coronavirus.

Lights, Camera…

It's our 30th anniversary! And since I am stuck at home like 90% of America, I've had few distractions and plenty of time to review tons of media from the past 30 years. My book "Raising a Child with Hemophilia" was published in 1990, when I was 33 years old. Armour Pharmaceutical Company wished to promote the book, and I found myself suddenly on TV and doing radio interviews, sometimes scheduled at midnight. The company hired a PR firm to work with me. We traveled to Cleveland, Dallas and Philly to make videos and promote the book. And some hemophilia nonprofits also included me in their promotional videos about hemophilia. It was a whirlwind time! I had two small children at the time, more books to create in the pipeline and a newsletter to produce, all done from home.

Guess what I found? Copies of the interviews and tapes. If you'd like to see them, go to our home page, click on "See" which will take you to our gallery, and click on "Videos." You'll see videos from the 1990s!

I did learn a few things: I never really liked giving interviews. Maybe it was just that I was always distracted with raising children and work (now I don't mind at all). And when the PR firm thought it was a good idea to plug the product my son was using, I ended the corporate-sponsored interviews. It was interesting, to say the least! But I never went back on my personal policy of never personally endorsing a product. Enjoy the shows!

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