A new diagnosis of any chronic medical condition can be a shock, disorienting and confusing. It can take time to absorb the impact. Yet, this is often one of the best times to ask questions and gather information that will help you make informed medical decisions effecting later life. Here at Let's Face It, we try to connect you with people, organizations, resources and information. Because facial differences can be caused by many different, you will find specific sources and information under the specific condition. On this page, you will find general questions and strategies to help you start on a the path to your new life.
Some people just want a brief explanation, while other people want to learn all they can. Your doctor will get you started, but there is always more you can find out.
For both approaches, one of the first steps is to ask the doctor or nurse to write down your diagnosis. It is hard to look for more information if you aren't sure how to spell what you want to find! Even if all you want to do is tell your relatives, it still helps to have it written down.
Also ask your healthcare provider what are other common names for this, and especially if there is common layperson's term for this. With these names, you should be able to find help either from health websites or your local public or medical library. Many hospitals and every medical school will have a library, at least in North America and most of Europe. These can be good places to begin your search for more information.
Finding a Good Doctor
This is one of those questions for which there is no one right answer. The doctor that is a perfect match for one patient or family might be horribly wrong for a different person.
Some patients feel safer with a doctor who will guide them through the process, making a firm recommendation for most of the necessary choices. Other patients want a doctor who encourages them to go out and learn as much as they can, asking them to be full partners in making shared decision making. Neither of these is right or wrong, it is just about finding the right match for you and your family.
It is the patient (or patient advocate) who needs to decide if they feel comfortable taking risks with innovative treatments, if they wish to follow a conservative treatment regimen, how much pain they are willing to accept for what kind of return, what level of functionality they desire to attain. You will probably be happier with your healthcare experiences if you think about these types of questions, and your preferred style of communication, and talk with your health care team about what you want and what is most important to you. This will help them to do their best for you, help you to find a doctor who can give you what you want, and give you the best possible chance at a happy outcome.
Make a Medical Diary
Medical diaries are helpful in many ways. They help you communicate with your doctor more effectively. They can help track and identify problems, so that they can be solved when they are small. If you are traveling and don't have access to your medical records, a medical diary can help a new doctor make better informed choices if you need care. If there is a problem with your medical care or billing, a good medical diary can help you communicate clearly with patient advocates or administrators to try to resolve the problem fairly for everyone. If well done, a medical diary protects both you and your doctors, empowers effective communication on both sides, and helps to reduce or eliminate medical error.
Start at the beginning. Make a note of every doctor's appointment, where and when the appointment was, who you talked with. Include what tests were run and their results, what questions were asked of who and what answers you got.
List medications that are prescribed, if you notice side effects. Note when medicines or dosages are changed, and why.For some medications, you may want to note if you miss a dose.
When you are at home, be sure to note if there are symptoms or discomfort that worry you. Note where and when this happened, and if there is anything that seemed to go along with it or that you think might have caused it. Depending on your condition, you might want to keep track of your food or sleep or activity patterns. You can ask your doctor whatwould be helpful information.
Bring your medical diary with you to appointments. Pack it or an abbreviated version of it when you travel, and keep it in your carry-on bag.
What about health insurance?
Please see the Financial & Insurance information page.