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Advocating for Yourself

Dr. Jill Hopkins

November 10, 2011 - Usually, life-changing events – a wedding, having kids, buying a house – aren’t approached casually. Preparation is in order; the more, the better.

The same’s true of being diagnosed with a retinal degenerative disease – among them, retinitis pigmentosa, Usher syndrome and wet age-related macular degeneration. While some diagnoses are delivered unexpectedly, most are preceded by inquiries from an eye doctor, followed by a series of tests.

So when the time comes to hear a diagnosis, it’s best to arrive at the doctor’s office prepared, according to Jill Hopkins, a Los Angeles-based 15-year retinal specialist and Foundation Fighting Blindness member. “You have to leave that appointment feeling satisfied,” says Dr. Hopkins, who, in addition to treating patients, co-designs and supervises clinical trials for treatments. “Whatever your most pressing concern is, it’s fair not to let that doctor leave the room without it being addressed. And you do sometimes have to be your own best advocate on that.”

Accordingly, Dr. Hopkins has put together a list (below) of the questions and issues that should be addressed either during a diagnostic appointment or in follow-up sessions with specialists, if necessary. The list covers everything from basic questions to the steps needed to live a healthy low-vision life. It’s followed by a link to disease-specific information provided online by the Foundation.

When attending a diagnostic appointment:

Have a list of key questions, including those covering the issues you are most concerned about.
Bring along a friend or family member for support.
Make sure you have enough time with the doctor. Book another appointment, if necessary.
Ask for a specialty referral or second opinion, if appropriate or you feel the need.
Request a list of resources, including links to support organizations – for example: low-vision centers, social services and advocacy agencies (for employment or school-related issues).
Use the Internet carefully to research your condition. Ask your doctor or a specialist about reliable sources, such as the Foundation Fighting Blindness.
Seek support from others affected by the same disease. A good source for this, supplying local chapter information, is FFB.
Inquire about research and the facilities in which it’s being conducted. Find out how you can learn more.
Seek resources applicable to living daily with the disease. Even if there is not yet a “cure,” there are tips and tools (e.g., assistive technology) that make living with the disease manageable.
Be wary of predictions about how long you will have vision. The progression of these diseases varies from one person to the next.
Ask how many patients with your condition are in the doctor’s practice. You want to determine the doctor’s knowledge of and familiarity with the disease, and other patients may be willing to serve as a resource or support system.
Ask about centers or practices that specialize in your condition. Even if you go only on occasion, it is good to be linked with a sub-specialty facility. The Foundation can help identify such facilities.
Articulate your symptoms, concerns and questions clearly; your doctor can help you best when he/she fully understands the issues you are facing.

The Foundation Fighting Blindness also offers information specific to each retinal degenerative disease. The list of diseases can be found here, and the information linked to may be used to tailor your questions further for doctor visits.

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