After many years of dealing with a rare muscle degenerative disease, my grandfather finally accepted my advice and sought a second opinion from an expert.  He did not trust the doctors in Connecticut and heard about a provider at Hopkins that specialized in his condition.  After a few phone calls, delivery of his medical records to the new doctor, and the solidification of traveling details, my grandfather received an appointment at Hopkins that would change his life.

Even though many people are related to or know a health care professional, they casually solicit advice, but never discuss the details of how to seek specialized care. When you or someone in your family is diagnosed with a disease, you have the right to seek a second opinion. Many times people accept what their physician says without questioning their opinion. A second opinion does not undermine the physicians knowledge or experience but an acceptable way to back up their findings. Your physician or insurance company can refer you to a qualified practitioner that will cross reference their own findings against the original finding a.

If you are interested in going to a specific institution, you can contact the institution directly and discuss your needs. Many times the operators are able to connect you with the right departments and the medical assistants can help you find the right practitioner for you. Many of the larger institutions have experience in rare disease processes or cases that other institutions may never see. You want to be treated by people who understand your diagnosis and are prepared to treat you holistically.

My grandfather’s specialist knew immediately what was going on with my grandfather and provided him with a prescription that slowed down his disease, braces to help him walk, and physical therapy. The ability for my grandfather to remain independent for a few more years gave him hope and helped with the frustration of losing his muscle strength. This experience renewed his faith in medicine and pushed him to do all that he could to stay healthy.

Many insurance companies have hot lines that allow you to call in and get guidance on choosing providers, specialist, or understanding your treatment options. There are support groups for patients and families who have been diagnosed with a life changing ailment. Additionally, there are specific organizations that provide resources and information for many common and rare conditions.

Reach out and know that you are not alone. Your health care experience should be empowering and not debilitating. If you have questions, write them down and ask them at the end of your doctors visit. Stay abreast on the new things that are going on with you or your family’s diagnosis. Help is not out of reach and you can make it through this.

Get a second opinion. Ask questions. Feel empowered. Be you. Do you. Tell your own story. On your own terms.