What makes it more ironic is that most of us are thinking hey the doctor's didn't even know what I had. I had to run around and search for someone that had heard of this rare disease what else do I need to do.
Yet, it is the biggest thing that a person with a chronic disease can do. We have the power to help others so they do not have to go through this. Wouldn't you do anything right now to stop your own suffering. How more honorable to help other people.
So are you ready for how you can help. If you have read this far I know you are tempted and want to do something to make things better for others. This is simple and it starts back in that physician's office that you visit to be treated.
Many physician's participate in or know of groups that are performing studies on numerous disorders. Research studies come in various forms and some allow for you to be in several studies at the same time. Some do give you different medicine's that they are experimenting with to treat conditions. Other studies are testing new equipment, herbal remedies, and even different procedures.
I happen to be a member of a study that is simply trying to gain information on gastroparesis. That way they may discover what caused it and eventually cure the disease. If nothing else it does give me a sense of giving back. I have a few physicians that have kept me alive by following guidelines that were established by past research studies. So it is my way of paying back those that took that chance back then.
If your physician doesn't know of recent studies there are several websites that list studies. You can contact the local medical college and see if they are doing any research. You can watch awareness sites they will often list studies that are taking place.
Just make sure that you join a legitimate study. Don't just trust websites make sure that someone that you can trust knows of the study or ask your physician to check it out before joining.
I am exhausted. Had another one of my study visits plus a physician appointment. Had a procedure to help gain information. Have a good night and remember it is up to us to Help Find A Cure. They need patients like us to see if treatments will work so it is never too late to help.
For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won. Until then don't give up hope. It is okay to rest on bad days, but on the good days enjoy life to your fullest because you deserve it.
There is so much more and remember this is something that I live with and am writing from my perspective. Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.
For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won. Until then don't give up hope. It is okay to rest on bad days, but on the good days enjoy life to your fullest because you deserve it.
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