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LIVING WITH RUNX1‑FPD

A diagnosis raises a lot of questions about staying safe, raising a family, carrying the emotional weight of cancer risk, and simply getting on with life. 

This page walks through a few of the questions families ask most often (many of which are on this page and in our FAQ), and points you to the tools and resources across our site that can help. It isn't medical advice, because everyone with RUNX1-FPD is different, but it can help you know where to begin.

Please also take a look at our patient and family resources here, which include information you can share with your medical team.

Pick a topic card below to read more.

Can I live a normal life?

Mostly, yes. RUNX1-FPD affects people differently. Some have very low or poorly functioning plateletsiTiny blood cells that clump together to help stop bleeding. In RUNX1-FPD they may be low in number or not work as well as usual., others have counts that look almost normal, so how much it shapes daily life can vary from person to person, even between members of the same family. You don't need to think about it every day. The single most important step is to work with a hematologist who understands inherited platelet disorders, so the two of you can create a plan that fits your body and your life.

→ See Can I live a normal life with RUNX1-FPD? in our FAQ.

Staying safe day to day

Because RUNX1-FPD can mean low or poorly working platelets, a few habits can help you avoid unnecessary bleeding. These are things to confirm and personalize with your hematologist:

  • Be careful with certain medicines. Aspirin and some pain relievers (like ibuprofen) can affect platelets. Tell every new doctor, dentist, and pharmacist about your diagnosis before anything is prescribed.
  • Look after your teeth and gums. Healthy gums bleed less, and regular dental care matters more for you than most.
  • Know how to handle a nosebleed. Learn the steps for stopping a common nosebleed at home so it's less stressful when one happens, and know when a bleed that won't settle means it's time to call for help.
  • Take any head injury seriously. Bleeding inside the brain is the most serious risk in RUNX1-FPD, and it can happen even after a knock that seems minor. Learn the warning signs (a severe or worsening headache, repeated vomiting, confusion, drowsiness, or changes in vision) and seek urgent care right away if they appear. It's worth agreeing on a plan with your hematologist ahead of time so you know exactly what to do.
  • Plan ahead for surgery, dental work, and procedures. Even minor procedures deserve a heads-up: your hematologist and your surgeon or dentist should be in contact beforehand so the right precautions are in place.
→ Download the Medical Card to keep your diagnosis on hand. → Read Beyond the Blood: What RUNX1 May Be Doing in the Rest of Your Body.

Your care team & monitoring

A hematologist familiar with platelet disorders is the anchor of your care. Most people have their blood counts checked regularly. How often is individual and depends on your age, your counts, your family history, and what your doctor sees over time. Some people also have periodic bone marrow checks. The goal of monitoring is to catch any change early, when there's the most to be gained.

If you don't yet have a specialist who knows RUNX1-FPD, we can help you find one.

→ Connect with a specialist near you. → Share the GeneReviews clinical overview of RUNX1-FPD with your care team.

Beyond the blood

RUNX1-FPD isn't only a platelet disorder. It's increasingly recognized that allergic conditions (like eczema and asthma) and autoimmuneiA condition where the immune system, which normally protects the body from infection, mistakenly attacks its own healthy cells. or gastrointestinal issues are more common in people with the disorder. If you notice symptoms like these, it's worth mentioning to your care team that you have RUNX1-FPD, since the connection isn't always obvious to a clinician seeing it for the first time.

→ Read Beyond the Blood: What RUNX1 May Be Doing in the Rest of Your Body. → Explore RUNX1 Insight Drops for findings on experiences that may be connected to RUNX1-FPD.

Living with the risk of blood cancer

For many families, the hardest part of the diagnosis is living with the uncertainty that comes with an increased risk of blood cancer. The risk is real and deserves monitoring, but know that many people with RUNX1-FPD never develop blood cancer at all.

There are general, healthy-living steps that may help lower risk, and you can find them in our FAQ. But just as important is tending to the emotional side. You don't have to carry the uncertainty alone, and connecting with others who can relate can help. Over the years we've grown a worldwide community, with regular opportunities to connect with others who are living it too.

And if blood cancer does become part of your story, there is practical help for treatment and its effects.

→ Read Understanding How Inherited Gene Variants Shape Blood Cancer Risk. → See What you can do to lower risk in our FAQ. → Explore our AML support resources.

Family & genetics

RUNX1-FPD is inherited in an autosomal dominantiAn inheritance pattern where a single copy of the gene variant, from either parent, is enough to pass on the condition, giving each child a 50% chance of inheriting it. way: if a parent carries a RUNX1 variantiA change in a gene's DNA. The specific change in the RUNX1 gene is what leads to RUNX1-FPD., each of their children has a 50% chance of inheriting it. That makes this a family matter as much as a personal one. Close relatives may want to consider genetic testing so that anyone who carries the variant can begin monitoring early. This is sometimes called cascade testing.

Telling family can be its own emotional journey, and there's no single right way to do it. We have a Family Letter you can share to help start the conversation, and a genetic counselor can guide relatives through testing, and can also walk you through family-planning options if that's on your mind.

→ Download and share the Family Letter to help start the conversation. → Read Spreading the Word on the RUNX1 Pulse Blog. → Watch our pregnancy and family-planning webinar.

Through the life stages

The questions change as life does. A few of the most common:

  • Children & school. Teachers, coaches, and school nurses don't need to be experts. They just need to know what to watch for and what to do. A short letter does the job, and a medical card travels with your child.
  • Girls & women. Heavy periods are common and very manageable with the right support, and a gynecologist who knows your diagnosis can help. Pregnancy is very possible. Plan it with your hematologist and obstetric team so everyone's coordinated. (see our webinar)
  • Sport & activity. Most people can and should stay active. It's worth a conversation with your hematologist about higher-contact sports and any sensible precautions.
  • Travel & work. Carry your medical information when you travel, and know where you'd seek care away from home. At work, you decide who needs to know. For most people, day-to-day life isn't affected.
→ Download the School or Camp Letter for teachers, coaches, and school staff. → Download the Medical Card to keep with your child.

You're not alone

No one should navigate this by themselves, and you don't have to. RRP exists to walk alongside you: