MDS World Awareness Day 2023

Today, October 25th, is MDS World Awareness day! Currently, around 87,000 people are diagnosed with MDS worldwide every year, with 170,000 people living with MDS in the US right now. This year, we decided to focus on anemia awareness in honor of today. Research shows that around 85% of patients are dealing with anemia at the time of their MDS diagnosis. In fact, it’s often symptoms of anemia that lead patients to their doctors office and eventually their diagnosis. 

The average age of diagnosis for MDS patients is 72, with the majority of patients over the age of 60. As we age, there are certain things we expect to change in relation to our health. Often, symptoms of anemia are the same as some of these expected changes.

Most Common Symptoms of Anemia:

• Extreme fatigue
• Weakness
• Shortness of breath
• Dizziness
• Headaches

Experiencing fatigue, weakness, and shortness of breath, while frustrating, are often not alarming to those in their 60’s and 70’s, as they are things we expect to experience as we age. However, extremes in these symptoms can be a signal to us that there may be something off in our blood counts. Taking these symptoms seriously and going to see your doctor is important to managing and maintaining your health as you could be dealing with something that requires attention and a doctor's help treating. 

Earlier this month, on October 3rd, we heard from Dr. Douglas Tremblay. Dr. Tremblay is an MDS expert and anemia researcher. He talked in depth about what anemia is, how it affects our bodies, how it’s treated, and what it means for patients. His presentation was incredibly informative and provided our MDS community with such great insights. To learn more about anemia and what you need to know, you can watch his entire presentation here. 

In August, we saw FDA approval for Reblozyl, a new drug developed to help specifically manage and treat anemia in MDS patients. This approval has been a huge step forward in MDS treatment and quality of life.

What Can I Do to Support MDS Patients Today?

One way you can support other patients, as a patient, is signing up for CureHub. CureHub is our online patient portal to help you manage your MDS. Cure Hub empowers patients with the knowledge needed to actively participate in their health journey while providing researchers with valuable insights from real-world experiences. Connecting patients and researchers not only accelerates the development of innovative treatments, but also lays the foundation for a future where more educated patients and research leads to more effective and personalized cures. While managing your own MDS care and treatments, you can participate in important research that will move an MDS cure forward. 

Whether you know someone who has MDS personally, or you just want to get involved, one way you can make a difference for MDS patients is to sign up to be a bone marrow or stem cell donor. There are organizations, like Be the Match, that will send you an at home cheek swab kit that will allow them to add you to a national registry so that you can become an option for patients who need a life saving transplant. If you are a potential match for a patient, the organization will reach out to you for some further testing. If you are deemed a good match, the organization will coordinate the donation process with you. All services, testing, travel and costs related to the donation are covered by the organization, so there is no financial cost to you. If you have any questions, the organizations have learning materials and email/phone numbers you can reach out to to have your questions answered on their websites.

Another service MDS patients rely on to stay healthy and manage their symptoms are blood transfusions. Patients need all types of blood transfusions, red blood cells, white blood cells and platelets. Donating blood at a local blood bank is a great way to help patients get these transfusions that they so desperately need, sometimes multiple times a week. The need is greater now than ever, so set up an appointment and help save lives! 

If you want another way to see an advance in MDS research and patient services, you can make a difference by donating to an MDS advocacy or research organization. We still have a long way to go to help MDS be as understood as other cancers and to ensure patients have successful treatment options. To donate to the HealthTree Foundation for MDS, click here. Every donation, of any amount, makes a real and lasting difference.