tips for patients with acquired hemophilia A
So you have just been diagnosed as having acquired hemophilia A. It is a chronic illness, which means there is no known cure and you will have to live with it for the rest of your life. However...don't lose hope! New treatments are being currently being investigated and developed. In the meantime, there are things you can do for yourself that will help you feel more in control of your situation.

Being diagnosed with a chronic illness at ANY age is difficult. I was diagnosed with a chronic, genetic illness when I was 12, so I have been living and dealing with it (and several others) for over 15 years now, but was only diagnosed with acquired hemophilia A in 2005. If you have never been diagnosed with a chronic illness before, I hope the following suggestions are helpful, and best of luck and health to you. If you like this page and found it useful, sign the guestbook or email me!

• DO take an active role in your treatment. Trained as a biologist, some doctors have been taken aback by my knowledge of immunology and pharmacology and feel threatened somewhat that I know exactly what they're talking about. Other doctors have applauded me for knowing what is going on with my body and doing research beforehand on possible treatment options. I think it's better to know as much as possible about your condition, in the event you are being treated by people who are not familiar with your condition (which is highly possible if you have acquired hemophilia A, since it is such a rare medical condition).

  My suggestions?

  • Before seeing a doctor, jot down any questions you have on a notepad so you won't forget them when you go to the doctor's office. This may include requests for new prescriptions, informing your doctor of new aches or pains, or anything else that is bothering you. Remember, you and/or your health insurance is paying for your doctor's visits, and you have the right to ask anything related to your health and well-being.
  • Take notes whenever you see any of your doctors. If anything doesn't make sense, make sure you ask for clarification. Refuse to leave the doctor's office until your questions are answered. Your doctor's job is to make you feel better *and* keep you informed on what treatments you are receiving.
  • If you are ever hospitalized, keep track of who has come by to see you. Have a notepad on hand for them to jot down their name and specialty. Then take notes on what they've said when they're talking to you, or after they have left. It can be overwhelming and scary when you are presented to doctors, nurses, medical students, and other hospital you have never met before. This will also help later if there are medical bills from doctors you do not recognize, because it is highly possible that you may receive a bill in error from a doctor that never treated you.
  • Request copies of your blood work and results of any procedures (x-rays, MRI, etc.) whenever possible. Remember, you and/or your health insurance is paying for all these tests, and you have the right to have copies of the results. It also helps if you keep these things organized in folders, so if you need to bring them to a doctor's appointment, you can easily find the results you need.
  • Go on the Web (using the links page as a starting point) or to the library to read more about your condition.
  • Keep your insurance card, business cards for all of your doctors, and other important health-related information (such as a Medic-Alert card) in your wallet at all times. Wear Medic-Alert identification if your doctor recommends you to register with their service. If you are somehow incapacited and unable to speak for yourself, emergency personnel will find these cards on you and be able to give you the right treatment. If possible, Xerox these cards onto a single sheet so you can present this sheet whenever you're admitted to the hospital or need to visit a new doctor.
  • Prepare a typewritten list of your medications and any pertinent doctors (with their mailing addresses and phone and fax numbers) that you currently see or have seen previously, and keep this updated. I can't begin to count the number of times this has been helpful to me when I've had to fill out new patient forms at a new doctor's office. Most of the time, the medications and doctor referral sections on the form are too small for me to list all my information anyway. Front desk staff will be happy to put this into your medical file, and doctors appreciate being able to read your information easily.
  • Remind your doctor that he/she should send a follow-up report to any other pertinent doctors. It should be a given that a specialist should send a report to your primary doctor that he/she has seen you and has made a diagnosis or recommendations for treatment, but in some situations, reports can be delayed, and this may translate to a delay in your treatment. I don't like being a bug in a doctor's ear and I know I am annoying office staff when I keep calling them, but I do get antsy if my well-being is at stake because some paperwork has been delayed.

• DO develop a good relationship with your doctors, especially your primary doctor. If you don't feel comfortable with your primary doctor, it's likely that your health care is going to suffer, because you won't ask important questions about your treatment or if you suddenly don't feel well. I am really thankful that my own primary doctor takes the initiative to contact my other specialists if he does not receive lab results or reports in a timely manner. In this day and age where everyone is on the go, it may make sense to find a doctor close to home, but again, your health care may suffer if the doctor isn't the right fit for you. And just because a doctor is famous doesn't mean he/she will be the best doctor for you.

• DO try and take a positive outlook on life. This may be very difficult, in light of bad situations. But your body doesn't need additional stress from worry, sadness, or depression. Take up a new hobby, get involved in the arts, take on a new creative outlet for your emotions. For me, I write a lot, and I listen to lots of different kinds of music for my many moods. I always think of myself as being somewhere in the "middle of the pack" - I've certainly seen people sicker than myself in the hospital, and I am thankful that my illnesses have not progressed that badly yet; in contrast, of course there are people out there who are sprightly and have no illness in their bodies at all. Knowing that I have some control over my life, I have friends and family, and I can still contribute to society - those are the things that keep me going.

• Have another suggestion to add? Email me!

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M. Chang
17 November 2006
last update 14 August 2008

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