Caregivers are key
After being diagnosed with myelodysplastic syndromes (MDS) and developing MDS-related anemia, a person may feel overwhelmed and nervous about the future. That’s where caregivers like you can help.
Whether a spouse, family member, or friend, a caregiver plays a major role in supporting someone living with MDS.
But no matter how you’re helping, remember—at every step of the way, the support of a caregiver can make all the difference in your loved one’s treatment journey. Your help is noticed and appreciated.
How can I help my loved one with their MDS-related anemia?
You can learn more about MDS and anemia
One of the most helpful things you can do as a caregiver is to learn about these conditions. The MDS Education Brochure provides useful information that will help you better understand MDS, anemia, and what can be expected over time. If learning about MDS-related anemia feels overwhelming on your own, ask a friend or family member to learn with you.
You can share how you’ve seen MDS-related anemia impact them
It can be hard sometimes for people to understand how their symptoms are affecting them, or to put these changes into words. But as a caregiver, you have a unique perspective. You may notice changes that are happening in real time, and you can speak up to your loved one’s healthcare team about these changes.
During the treatment journey, think about questions like:
- What parts of my loved one’s routine have changed over time?
- What tasks do they need help with? What parts of their day have become difficult for them, and when did things start getting harder?
- What changes in their health or behavior have they (or I) attributed to aging? When did these changes start?
- Have they brought up any feelings of discomfort, tiredness, or severity of their symptoms to me recently? If so, what situation prompted them to share this?
Talk about your answers to these questions with your loved one and with their healthcare team. This information may give greater insight into your loved one’s health.
You can help your loved ones set their goals
When treating anemia, the healthcare team will set treatment goals that are important for everyone to understand and remember. Speaking up during appointments and discussing the answers to these questions will help you know what symptoms might need attention.
You can also help with setting activity-based goals, which are goals that can be measured in terms of day-to-day life. If your loved one is having symptom-related lifestyle changes, you should discuss them with their healthcare team.
You can help them stay organized
There will be a lot of information for your loved one to keep track of. Helping with note-taking, organization, and tracking is a great way for you to make a difference.
At appointments, help them track:
- Test results, including hemoglobin (Hgb) levels
- Transfusion information, including dates and units
- Treatment information, including dates and dosages
- Progress toward treatment goals, including any updates from their healthcare team
- Any follow-up appointment details
At home and between appointments, help them track:
- How they feel right after a transfusion (usually pretty good)
- How they feel in the time leading up to their next transfusion (usually not as good)
- Their progress toward their goals
- Changes in their symptoms
Get more information about tracking:
You can speak up with the healthcare team
People living with MDS can sometimes find it hard to speak up with their healthcare team, but their caregivers can help.
When you’re interacting with their healthcare team, you can advocate for them by:
- Asking questions and taking notes during appointments
- Arranging for a translator
- Sharing any health and symptom information you and your loved one have tracked
- Making sure healthcare providers from different facilities are sharing information
- Reminding the healthcare team of your loved one’s treatment goals and progress so far
Not sure what to ask in appointments?
The MDS Education Brochure has example questions.
You can connect with MDS advocacy groups
MDS advocacy groups were created to support you and the person you’re caring for. These groups have valuable resources made specifically for people living with MDS and anemia and their caregivers, including:
- Disease education materials
- Opportunities to connect with other MDS caregivers and patients
- Expert opinions and up-to-date research
Partner websites to explore
The following organizations provide disease education, additional support, and expert opinions. This list of independent organizations is provided as an additional resource for obtaining information related to MDS. This list does not indicate endorsement by Bristol Myers Squibb of an organization or its communications.
Select each organization's logo below to visit their homepage and learn more.
You can take care of yourself, too
Caregivers can sometimes become so focused on the people they care for that they forget about their own well-being. But you can be an even better caregiver for your loved one when you’re also taking good care of yourself.
Here are some self-care strategies:
Care for your mind
Set aside time for your hobbies, your friends, and any activities that help you relax—even just watching TV
Care for your body
Try your best to eat well, get good sleep, exercise when you can, and visit your doctor regularly
Care for your connections
Look for community with other caregivers, and talk to your friends, family, or even a therapist about how you’re doing
It’s normal to sometimes feel scared, lonely, sad, or like you’re handling everything yourself. Remember: you’re not alone, so don’t feel guilty if you need support from friends or family. Communicating and asking for help are both important for your own well-being.
If the person you are caring for is being treated with REBLOZYL, we’d love to hear your stories. Your story could help other patients and caregivers along their journey. Visit ShareToInspire.com or call us toll-free at 1-855-436-5866.
