The Northern California Comprehensive Thalassemia Center

Our latest thalassemia newsletter is posted here: http://thalassemia.com/documen/perspectives.2020.spring.pdf

After the remarkable success of the first #TIF ethalED #Webinar for Healthcare Professionals, the second one is already underway! We are very excited to announc...e today that Prof. John Porter, Professor of Haematology & Consultant Haematologist at the University College London Hospitals in London, United Kingdom will be the host of the ''Access to New Therapies'' on Friday, 5 June 2020, 15:00 CET. Prof. Porter will be sharing with participants his insights on novel treatment approaches, such as #GeneTherapy, for #patients with -#thalassaemia. You can register through the following link: https://forms.gle/tdCH8SZiEdkxBMJQ8 #InnovativeTherapies #MedicalSpecialists #eThalED #eThalEDCourse #THALIA #THALIA2020 #TIFWebinars

When I first started dating, I would tell the person, ‘Oh, I just have to go to the hospital to take care of some things, but don’t worry about it. I just have a blood condition that requires that I’m in the hospital all day on Fridays.’ That’s it, no further details needed. As I got older, and relationships lasted longer, I would divulge more information. A lot of them would be supportive and come with me to doctor’s appointments. Usually their first thought was: everythin...g seems very normal until it isn’t until you see a mediport, or you see a bag of blood hanging. And suddenly the person you know as really outgoing and goofy and funny is a patient who has a mediport, who is at the mercy of having to sit for 4-6 hours receiving blood. Usually, I remind them that I am still the outgoing and funny person that they know, and this is just one aspect of my life. It’s not all blood transfusions and medication, there’s a lot of things in between. ------------------------------------------------------------------------------ Jesse is also a patient advocate and runner who raises awareness for rare blood disorders by participating in long-distance races. Read more about his story and work here: https://rareundiagnosed.org/running-for-run-taking-awarene/ ============================================= During the COVID-19 pandemic, our blood supply has decreased dramatically. Blood donations are crucial so that people with thalassemia and other blood disorders can not only survive, but thrive. Make an appointment to donate blood at your local Bay Area donation center today: Call 1-877-258-4825 or visit bloodheroes.com

Mom: G was so little and such a hard poke that it took multiple tries to do his IV. And we were like, ‘Is this going to happen every single time? Is this his future?’ Dad: I think the turning point with the IV pricks was when it turned into, like, ‘Why don’t we get him involved?’ He just wanted to be involved in it. Like he would clean up the Emla, and he would hold the rubber thing for his arm. He became part of the process. Mom: We have to thank Debbie, she’s the retir...ed nurse from the hospital. Dad: And Diane, too! Mom: Diane, too! That was the start of him turning around with the IVs. They were like, ‘You know what, let him watch. Don’t turn his head away.’ It stopped being scary. G: I LIKE transfusions! There’s a game there! I want to play all the time. -------------------------------------------------------------------------- During the COVID-19 pandemic, our blood supply has decreased dramatically. Blood donations are crucial so that people with thalassemia and other blood disorders can not only survive, but thrive. Make an appointment to donate blood at your local Bay Area donation center today: Call 1-877-258-4825 or visit bloodheroes.com

In India where I was born, it was not easy to get blood. My mom used to ask college students, like, ‘Brother, can you donate blood for my daughter? She has thalassemia.’ As long as we brought a donor to the blood bank, we could trade it in for blood matching my type. My mom would also volunteer at the blood bank so she could get the first blood. You know how people wait in lines now for toilet paper? Well it was the same thing for blood. We used to think I would die at age ...12. But when we moved to the US, we realized I could get blood regularly no matter what because people would always donate. I could realize all my goals and dreams here, as long as I got transfusions and chelated. Now, I want to become a nurse because I have thalassemia. All the nurses here, the way they’ve treated me I want to treat patients one day, just like that. --------------------------------------------------------------------------------------------------- During the COVID-19 pandemic, our blood supply has decreased dramatically. Blood donations are crucial so that people with thalassemia and other blood disorders can not only survive, but thrive. Make an appointment to donate blood at your local Bay Area donation center today: Call 1-877-258-4825 or visit bloodheroes.com

Many individuals in our community depend on a stable blood supply to survive. If you can, make an appointment to donate at your local blood donation center today! Call 1-877-258-4825 or visit https://www.bloodheroes.com/

"Stamatoyannopoulos stood up for people he believed in and invested himself in the careers of people who wanted to work on behalf of patients." Leaders in the field of hematology gathered on September 16, 2019 to remember George Stamatoyannopoulos and honor his enormous impact on present-day research on sickle cell disease, thalassemia, and blood cancers. https://newsroom.uw.edu//young-dreamer%E2%80%99s-early-vis

https://www.cdc.gov//blooddisor/webinar-save-the-date.html

There is a striking imbalance between the life expectancy and quality of care for individuals with thalassemia in high-resource countries like the US and Canada, and individuals with thalassemia in low-resource countries like Sri Lanka. The Canadian-based charity Hemoglobal works to improve medical care throughout Asia for children who are suffering from the potentially fatal blood disease, thalassemia. Help Hemoglobal reach it's goal to "Make Care Fair" by contributing to their GoFundMe: https://www.gofundme.com/hemoglobal

We had a blast at Team Bay Area's Thalassemia Care Walk in April! Thank you to everyone who came, donated, and helped set up. Special shout out to our captain, Seema, and her family for making it happen!

It's International Thalassemia Day -- a day to celebrate, support, and raise awareness about people living with thalassemia worldwide. Below are links to thalassemia organizations locally, nationally, and internationally. Get involved today! . . Join BCHO's thalassemia outreach email list to learn about thalassemia events in the Bay Area https://forms.gle/5V4cLpuXcX94ogXr7... Cooley's Anemia Foundation http://www.thalassemia.org/ Thalassemia International Federation https://thalassaemia.org.cy/ Hemoglobal - a non-profit seeking to improve global disparities in thalassemia care https://hemoglobal.org/