Family Member Diagnosed With Aplastic Anemia. Help?

[JustSomebody8]

Hello,
I am new here because I want to know more about Aplastic Anemia. Someone of my family has been diagnosed with it recently and I want to help him with everything I can. I've been searching Google for information, and while the basics are clear, the rest is still a little vague.

Like the life expectancy. One website said 3 months if it's left untreated, another said 2-5 years if you get a bone marrow transplantation, and the next one said 66 weeks if left untreated. So what's the right number? I know it's probably different for everyone but can't I get at least some kind of guess?

The one diagnosed with Aplastic Anemia is only 17 and he doesn't want to get treated. He's always been a little suicidal and has been depressed for a long time and I'm afraid I won't be able to convince him to get treated. What if he doesn't? Will he die? I read that they could give you blood transfusion, but is that enough? Can he be cured with pills alone? Please, help me.. Tell me something that isn't on the basic websites...

[Neil Cuadra]

JustSomebody8,

Aplastic anemia is classified based on lab test results, including blood counts. Moderate aplastic anemia (MAA) may not need to be treated, at least not yet, and can instead be watched over the coming months with regular blood tests. Severe aplastic anemia (SAA) or very severe aplastic anemia (VSAA) must be treated or the patient has a strong chance of dying of an infection or blood loss, including within months. Therefore, it's critical that you learn what his disease classification is. I think that if it's SAA or VSAA then you should assume that he will die without treatment. If it's MAA then you can take more time to study the disease and learn how the family can help this young man.

Temporary treatments include transfusions and blood boosters called growth factors. Longer-lasting treatment consists of drug therapy or a transplant. For a 17-year-old with SAA or VSAA, I'd pretty sure that the doctors would recommend the longer-lasting treatment approach. Drug treatment would probably require days in a hospital, not pills. The standard drug treatment is called ATG. They would also test siblings to know if there's a possible match for a possible transplant. But I don't know how treatment approaches differ between Belgium and the U.S.

Some people live their whole life with MAA. For more serious cases, ATG treatment or a transplant can produce permanent cures, although some patients may relapse, even many years later, and need a repeated treatment. I've met several people who have had aplastic anemia for over 20 years.

Most aplastic anemia patients do well when the disease is recognized and care is orchestrated by doctors with aplastic anemia experience.

I'm not a doctor but I can suggest a number of ways you might deal with a depressed teenager who has AA:

1. Have a family member step in and manage his health care, especially if it's SAA or VSAA and prompt action is needed. (At age 17, I assume that a parent still has legal control over his health care.) A teen like this may not have the will to protect his own health, but may also not have the will to resist being cared for.
2. Seek professional help, which many teens need and are getting, whether or not they also have another illness. You or his parents can seek treatment through his general practitioner, through his insurance company, through social services at the AA treatment center, or on your own. Clinical depression should be treated like other diseases, starting from a professional evaluation. It's rarely an illness that can be cured or even managed quickly, but the sooner you start the better.
3. Talk to the doctors honestly about this problem. They'll understand that there is more than AA to deal with in order to help this young man. I'll bet they've seen it before.
4. Have a very direct talk with the teen. Let him know how concerned you are, how much you care about his future, and what you are willing to do to help.
5. Encourage the teen and the doctor to talk directly, even in private. Teens will often have negative reactions to their own family (they are at that stage in life when it's natural to want to break away from family influences), and hearing the facts from a doctor may "sink in" more than they would coming from the family. It helps if the doctor treats him like an adult (and if you do to, as much as possible).
6. Listen to him as much as possible, and be available to listen. He may not understand the world and how to make big decisions about health care on his own, but he may respond best when treated as an adult and a partner on his own health care team.
7. If it's moderate AA and he's willing to go to checkups (even if he's not showing interest in any treatment), don't rush into big decisions. You can take more time to find the best approach to helping him.

If you aren't one of his parents, make sure you and his parents are working together as a team, and that the young man hears consistent messages from all of you. Avoid confrontations that pit him against family members. Instead, consider this to be a fight between the family team and a rare disease.

You can get more details about this disease from this free information packet from the Aplastic Anemia & MDS International Foundation.

Although it's technical, this is an excellent article about treating aplastic anemia.