STORIES OF INSPIRATION
During Holiday Season
https://www.hemlibra.com/

In recent years, people with hemophilia A have found hope thanks to important developments in the treatment of this bleeding disorder. For some living with this chronic condition, this may mean experiencing the coming holiday season with a new outlook on living with hemophilia A.

Guy is in his mid-30’s and was diagnosed with hemophilia A at birth. As a child, he experienced spontaneous brain bleeds at 18-months-old and again at three-years-old, which led to him becoming legally blind and experiencing seizures. Guy remembers going to the hospital multiple times a week for treatment and having over 20 surgeries. As a young adult, he avoided certain activities that might lead to a bleed.

Hemophilia A is a rare genetic bleeding disorder, typically diagnosed at a very young age, in which a person’s blood does not clot properly, leading to uncontrolled bleeding that can occur spontaneously. There are approximately 20,000 people who have hemophilia in the United States, with hemophilia A being the most common form.1,2 For people diagnosed with this rare condition, it can be a life-altering diagnosis. Even with treatment, hemophilia A can result in bleeds in muscles and joints that may lead to joint damage and chronic pain.2

People like Guy can face significant challenges managing their condition.3 After decades of accepting this as his normal, he began a different medicine that he takes once a month and has experienced fewer bleeds requiring treatment. Guy recently earned a master’s degree to pursue a career in strategic marketing. He has so much to celebrate this holiday season–it will be particularly special as his first as a newlywed after getting married in a small ceremony this past June.

Dr. Amy Shapiro, a hematologist-oncologist and Co-Founder of the Indiana Hemophilia and Thrombosis Center along with Guy Law, to discuss the impact this latest treatment continues to have for people living with hemophilia A.

Interview is courtesy: Genentech

1 Hemophilia Federation of America. Hemophilia A. https://www.hemophiliafed.org/understanding-bleeding-disorders/what-ishemophilia/hemophilia-a. Accessed October 12, 2020.
2 Mayo Clinic. Symptoms and Causes. https://www.mayoclinic.org/diseases-conditions/hemophilia/symptoms-causes/syc20373327. Accessed October 12, 2020.
3 Bauer, K. A. (2015). Current Challenges in the Management of Hemophilia. American Journal of Managed Care, 21(6).

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After almost 4 and 1/2 years Amanda decided that her job here was done. She was hospitalized with pneumonia and seizures on March 13, 2013, while her parents were in Hawaii on vacation. On March 23, Amanda did not want to be poked and squeezed anymore. She was done and did not want any type of medicine or food. There was a family meeting on March 24 and Amanda’s dad Jim Brownell SIGNED the POST form to not recessitate or intibate. She returned to her LSA – Baywood HOME (since June 2010) on 3/27/13. Then on April 1, 2013 Amanda spent her last 16 days of life at home with her parents, family, friends and dogs (Jack Skellington Sparrow and Spencer Spot Brownell) .

Amanda’s Mother, Ann Solorio Brownell has shared the PAIN of Amanda’s story, more than 1,000 times in front of more than 50,000 people, to educate everyone about these serious issues of suicide, bullying, and self-harm while spreading the message of LOVE for all people and all living things.

We are parents, grandparents, caregivers, siblings, friends, teachers, neighbors, social workers, school administrators, and students.

You are invited to stand against ALL forms of bullying by taking this simple pledge, to join as an Amanda Network Member:

“I pledge to not allow bullying in my presence.
If I don’t report it, I am just as guilty.”

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