We're ending the Mitochondrial Awareness Week with a blog on the importance of Advocacy.
Having been part of Miracles for Mito this past year, I have had an opportunity to talk to several parents of children with Mitochondrial Disease as well as adults living with Mitochondrial Disease.
Many of the children and adults don’t have a confirmed Mitochondrial Disease. It is a probable, possible or unspecified Mitochondrial Disease. For many doctors they are still considered undiagnosed patients rather than Mitochondrial patients.
Many parents of probable and possible Mito kids are frustrated. They feel that they are not taking serious. They come into the Emergency Room with a very sick child, but no one has heard about Mitochondrial Disease or knows how to treat it.
It is frustrating. It is heart-breaking. It is tiring. It is draining. It has in some instances gotten so far that the parent and/or carrier of Mitochondrial Disease starts to doubt themselves. Maybe they don’t have Mitochondrial Disease? Maybe this is all in their heads? Maybe they are not even sick? Maybe this is all pretend?
This is where advocacy becomes critical. There are many great doctors out there, but there are very few doctors who know about Mitochondrial Disease or even want to specialize in that particular Disease. That is a fact, and we all should be aware of that fact.
It becomes your job to find a doctor who knows or wants to learn about Mitochondrial Disease. There are lots of information on Mitoaction’s website (www.mitoaction.org) that you can give your doctor and ask them to read up on before you see them next time. If they do, and they want to partner with you on this journey –great! If not, you have to find a new doctor. None else will do that for you. I know it can be hard. I know it can be a battle, but the fact is that it is too important to not have doctors following you that will support you every step of the way.
Not every doctor in the ER will be a Specialist in Mitochondrial Disease, so having the right letters in place from your Mitochondrial Doctor that will let the ER team know what you or your child need is critical. You can find sample medical and school letters on Mitoaction’s website, so it will be a simple step to get them customized for your case.
So, if you do feel that you have gotten stuck, that you are going from doctor to doctor telling them about Mitochondrial Disease, but you’re not getting anywhere. It is time to prompt your doctor to do his research, and then make your decision based on your doctor’s response.
Advocacy is something we all can do. Advocacy is one of the most powerful tools in making sure you and your child get the appropriate care. In our case, not every doctor on Jacob’s team is a specialist in Mitochondrial Disease, but his two most important doctors are. They will then work with Jacob’s other specialists, the ER, and in-patient physicians to make sure Jacob gets the appropriate care.
If you do feel stuck, never hesitate to contact Miracles for Mito (www.miraclesformito.org) or myself directly to strategize about next steps on your journey. Please check out our daily blog entries from the past week as well!