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Do you have FA? Do you know someone who does? Either way, you’re in the right place.

Gage Klein, FA fighter
Gage Klein, FA fighter

FA (Fanconi anemia, named after the doctor who discovered it) is a rare disease, so it’s natural to have questions. So here, we’ll cover a few of the most common ones that kids diagnosed with FA or who have a friend with FA ask:

What is FA? Fanconi anemia is a blood disorder caused by a defect in genes inherited at birth. Only about 1 in every 131,000 people will be affected by FA, so those who have it really beat the odds. (Though we’re sure they would rather have won the lottery instead.)

Can I give FA to someone else, or get it from someone with FA? Nope. FA is strictly genetic, meaning that it’s inherited instead of being caused by a germ, virus or anything in the environment. You can’t get it from anyone or give it to anyone.

What are the symptoms of FA? The truth is, FA is different for everyone. Some people are born with heart, kidney or other physical defects. Some seem perfectly healthy for years. And down the road, everyone with FA will eventually need a bone marrow transplant in order to keep their body producing the cells it needs to survive.

How is FA treated? Right now, FA can’t be prevented or cured. Instead, treatable symptoms (like tiredness, infections or nosebleeds) are handled individually as long as the person’s blood counts remain relatively high. Once blood counts drop below a certain level, a bone marrow transplant is necessary.

What’s a bone marrow transplant? How does it help kids with FA? With a bone marrow transplant, healthy cells are taken from a donor whose DNA closely matches that of the patient. Then, those cells are given to the FA patient through a blood transfusion. These healthy cells replace the non-functioning cells within the patient’s bone marrow and, if successful, allow the patient to start producing blood cells again on their own.

Does a bone marrow transplant cure FA? Unfortunately, no. A successful bone marrow addresses the problems an affected patient may have producing blood cells, but FA is a chronic disease that currently has no cure. And even after a fully successful transplant, kids with FA still have a much greater chance of getting several types of cancer or developing other conditions than people without FA.

What can I do to help? If you have FA, stay strong. New treatments and breakthroughs are being discovered nearly every day. If you don’t have FA and want to help, asking any adults you know to join the National Bone Marrow Registry is a great place to start. The more people that join, the more potential matches there are for patients with FA. Of course, you can also hold a bake sale, car wash or other event to raise money for Kidz1dtFund as well. Money helps fund research, and research is what will one day find a cure.

To find out more about how to make a difference in the fight against FA, email [email protected].


Learn more about Fanconi anemia from the words of an FA fighter, Lily Strang - view or download her book below:

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