Your Guide to Navigating MF
Caring for someone with myelofibrosis can bring ongoing questions. You may notice changes in their energy or appetite over time, or need to help them navigate blood tests or imaging. MF may be unfamiliar at first, but you don’t need to navigate it alone. Trusted education and supportive resources can help you feel more confident as you and your loved one move forward.
Use the sections below to explore information and tools designed to support you and your loved one.
Tracking MF Symptoms
MF symptoms often change over time, which may make planning difficult. This resource helps you track symptoms and how your loved one is feeling day to day.
Preparing for Care Conversations
Keeping track of symptom changes, spleen size or fatigue can feel overwhelming. This resource can support you as you prepare for appointments and ongoing discussions about care.
In the Know About MF
Use this infographic to quickly access tips and foundational knowledge regarding what to learn, ask, decide and consider as an MF caregiver.
Hear from MF Care Providers
Watch this video series to hear three MF healthcare providers discuss differences in how MF progresses, key medical terms to know and the role of blood counts in MF treatment.
Tips for MF Caregivers
This resource acknowledges some of the challenges you may face as an MF caregiver and offers guidance on self-care, mental health and finding community.
Caring for Yourself
You may experience stress and fatigue as you support someone with a rare condition. This resource offers emotional support and practical guidance to help you stay well.
Coping With an MF Diagnosis
Learn how an MF diagnosis can affect mental health and discover stress management strategies to help you and those you care for.
Myelofibrosis Caregiver Support
You may find comfort in meeting caregivers who share similar experiences. This resource offers ways to connect with rare disease communities and other trusted organizations.
Ongoing Support
As your caregiving journey evolves, you may benefit from additional emotional, informational or logistical support. Explore long-term care resources here.
Putting It All Together
Making sense of MF
In MF, changes in bone marrow cells lead to the development of scar tissue. As this process continues, normal blood production can slow, which may cause fatigue, weakness or abdominal fullness from an enlarged spleen. Some people may have mild symptoms for years, while others may experience changes more quickly. Understanding what is happening inside the body can help caregivers recognize patterns and prepare for conversations with the care team.
What are the signs and symptoms of MF?
Some people experience gradual changes, including:
- Fatigue
- Feeling full quickly or abdominal discomfort
- Bone or joint pain
- Easy bruising
- Night sweats
- Weight loss
- Fever
- Enlarged spleen
Watch this story to better understand the experience of someone living with MF.
Questions you may have during your care journey
During every stage of MF caregiving, it’s normal to feel uncertain about what comes next. Consider asking your care team the following questions.
- Which symptoms should we watch for at home?
- How do we know if MF is progressing?
- What treatment options may help manage symptoms?
- When should we meet with a transplant specialist?
- How often will blood tests or imaging be needed?
For more information to guide your discussions, download the resource below.
Affordability and Access
Sobi is committed to helping patients and their loved ones access the care they need. Our Sobi patient support programs are available to people prescribed a Sobi medication and can provide guidance on insurance and financial assistance to help make treatment easier to manage.
MF Advocacy and Support Organizations
You are not alone. Connecting with advocacy organizations builds connection and support through shared experiences. These groups offers MF resources for both caregivers and people living with MF.
Cancer Research & Treatment Fund (CR&T)
Supporting innovative blood cancer research and clinical collaboration to improve treatment options for MF and other MPNs.
MPN Advocacy & Education International
Providing education, advocacy and community support for people affected by myeloproliferative neoplasms (MPNs), including MF.
MPN Cancer Connection
Connecting people living with MPNs, including MF, as well as their caregivers to educational resources and research updates.
MPN Education Foundation
Delivering education programs, clinical information and peer support initiatives for people affected by MPNs, including MF.
MPN Research Foundation
Advancing research to accelerate new treatments for people living with MF and other MPN blood cancers.
PV Reporter
Providing research updates, expert insights and educational resources for people affected by MPNs, including MF.