Why Is My Condition so Rare? What Are My Options?

Rare Conditions

Dealing with health issues is a challenge in itself. Having a rare medical condition adds additional levels of obstacles and disarray. In addition, you may feel that your questions and concerns are being ignored or disregarded. It is unfortunate that these challenges are shared by so many individuals dealing with rare conditions. It should be this way, and I am here to tell you it doesn’t have to be that way. Your experience navigating through a rare medical disorder can be improved with the help of a private patient advocate.

A private patient advocate is distinctly different from a complementary patient advocate offered by your health insurance company or hospital system.  Having an experienced private patient advocate with a medical degree offers you individualized and personalized guidance, keeping your best interests in mind. If you want to learn more about what makes a private patient advocate unique, read more here.

There are several factors to consider when living with a rare health issue. Let’s discuss a few below.

Are Your Symptoms Accurately Diagnosed?

It is quite common for someone with a rare condition to have additional medical conditions. It is often hard to decipher what symptoms are a result of your rare diagnosis or perhaps another condition. This is one of the many reasons it is so essential to obtain second options and additional testing so that you truly understand what condition or conditions you have. The first step in treating a problem is diagnosing it. A private patient advocate can help you find the right experts you need and the proper testing options.

Quality of Life

Take a minute and consider your quality of life. Everyone's definition of quality is different. Think about what a good quality of life means to you. What things are most important to you? What activities? What people? Defining what a good quality of life means to you will help determine what goals to achieve in managing your condition. It may feel discouraging to think about your quality of life because, in the current state, your quality of life may not feel so great. Fortunately, there is potential to change this for the better.

Treatment Options

A private patient advocate can assist you with researching various treatment options to consider, as well as arranging access to treatment options. Remember, your condition may not be so rare to us. As a private patient advocate, I have helped many clients with rare disorders. You may be surprised at how familiar we are with your condition. Even if we have not had a prior case with your specific medical condition, our experience with working with similar rare conditions can help us navigate along your journey to managing yours.

We are here for you, even when it feels like no one else is listening.