Key Steps for Newly Diagnosed MDS Patients

If you've recently been diagnosed with MDS, we're sorry that you're in a club that none of us wanted to join. The good news is that you will meet the kindest people in the MDS community and the HealthTree Foundation for MDS is here for you! 

Here are five steps to reduce your anxiety and take meaningful action:   

1. Find an MDS Specialist

If you do only one thing for your care, it will be to find and consult with an MDS specialist. According to several studies, having an MDS specialist on your team can add quality years to your life. You can always consult with a specialist periodically and get care closer to home, as your local oncologist and MDS specialist coordinate together to give you the best care. Do not leave your sole care in the hands of a local doctor. Your life is worth the effort. 

Find an MDS Specialist

2. Get the Right Tests

Before you start treatment, you should make sure your doctor performs the right tests. These include blood counts, bone marrow tests, immunohistochemistry, flow cytometry, cytogenetics, and fluorescent in situ hybridization (FISH). You can start now to become an educated and empowered patient who knows the right kind of tests, labs, and care you should be receiving. 

With the results of these tests, you will understand the type of MDS you have. Not all MDS is genetically the same. The genetic tests must be run before you get treatment, otherwise, there are no MDS cells to test. Treatment does differ between the types of MDS. You are fighting a war and you want to understand your enemy. 

What are the essential MDS tests?

3. Join HealthTree Cure Hub to Learn What Others Have Done Before You

HealthTree Cure Hub provides a suite of tools to help you stay ahead of your MDS.

Join HealthTree Cure Hub

Track Your Labs

You’ll start getting an overwhelming number of labs run and you’ll want to start tracking your MDS markers. Keep everything in a single place, like your genetic reports, MDS markers, and other critical information so you can graph your disease. You’ll also be able to access an easy graph showing how each treatment affects your MDS that you can share for second opinions.

Find Your MDS “Twin”

In HealthTree Cure Hub, our Twin Machine technology lets you see what other patients like you have received for care, based on their type of MDS. Look ahead and find your twins who are years ahead of you in treatment. Who had the longest remissions? Take notes of their treatments and discuss them with your doctor. 

Discover Side Effect Solutions

See real-world data of how people are living with their side effects and what they are doing to try and ease them. You can also share your experiences with other patients and vote on solutions that have been successful for you in combating your side effects. By sharing our experiences, we can help each other have a better quality of life.

Contribute to Research *Surveys and Studies Coming Soon*

Add as much information as you can or upload your electronic health records to HealthTree Cure Hub to help MDS researchers connect the dots through anonymized patient stories. There are also surveys and studies that you can participate in by MDS specialists from around the world. These simple, yet innovative surveys and studies will help MDS experts accelerate MDS research.

Join HealthTree Cure Hub

4. Start Learning through HealthTree University

Chances are before being diagnosed with MDS, you had never heard of the disease before. It's overwhelming to receive that diagnosis and then be immediately thrown into making treatment decisions. 

It is in your self-interest to get educated as quickly as possible because empowered MDS patients live longer. Rather than consult Dr. Google, join HealthTree University. We’ve built a comprehensive curriculum in HealthTree University to make getting up-to-speed on MDS easy. Start with the MDS Basics classes and work your way up. The classes are taught by 12 MDS experts and today we have over 72 lectures in 9 courses (with more to come!). We want you to spend your precious clinic time asking your doctor questions about your care, not MDS basics. 

Learn from HealthTree University

5. Join the HealthTree Community for MDS to Learn More and Make MDS Friends

The HealthTree Community for Myelodysplastic Syndromes consists of the Podcast, Round Tables, Chapters and Events, and News programs. Here are some actions and steps you can take to get involved in this amazing Community: 

• Listen to HealthTree Podcast for MDS episodes and hear 1:1 interviews with MDS experts 
• Watch HealthTree Round Tables for MDS and hear what's new in the world of MDS from MDS specialists across the globe
• Join a HealthTree Community for MDS webinar that interests you and connect with others through events 
• Join our social media group called HealthTree Connect. 
• Join our newsletter to read weekly articles and get familiar with MDS terminology, it's a whole new language! 

And as always, reach out to us at support@healthtree.org if you need more help. We’re here for you! 

Best Wishes, 

Jenny Ahlstrom, Founder of the HealthTree Foundation