Dr. McC WANTS TO PUBLISH MY CASE!

[CindyRPT]

Thanks for all the kind & uplifting messages!! I loved reading them all! I was so excited about it, I just had to share. When I e-mailed Dr McC back to telll him that I would be happy to help him with his report, I LITERALLY had goose bumps! Collaberating with the great Dr McC is definitely a gift amongst all the trials & tribulations I have (and continue to) deal with. If it weren't for this board & all of you guys helping me through this process, I wouldn't have ever known about Dr McC. And for that, I thank you.

 

And it is my hope that with each one of us who have our cases published, it will help another Cushie get diagnosed & treated sooner. If a person has strange symtpoms like I did (ptosis, vertical diplopia, IH with hyperplasia, etc...) then maybe this case study can clarify the etiology. Being a cyclic Cushie complicated everything. I had the symptoms, then they would go away, then they would come back. Dr McC has figured this all out now and I'm looking forward to seeing a case study focusing on the rise & fall of symptoms and associated morbidities with a person who has cyclic Cushing's. I think cyclic Cushing's is still misunderstood and many doctors need to be educated about it. It seems to me that there are many of us that are cyclic.

 

And I think about all those that went so long before they got the treatment they needed after going from doctor to doctor. You know, I cried when I read about Natalie's death. I didn't know Natalie personally, but it really hit home (and hard!) We had our BLA surgeries only 3 days apart and as I lay my head down to sleep last night, I wondered...."Will I wake up?" I was having a bad day yesterday & had to take extra hyro. Could this happen to me? It saddened me so, to hear of a young, vibrant, loving individual....a wife, a mother, and a friend to so many, lose her battle to this dreaded disease.

 

With each one of us that have been diagnosed, maybe we should talk to our doctors & see if they would like to publish a case study. The more reputable studies that are out there, the more resources there will be for patients & doctors. Maybe we shoud start a grass roots effort to get more publications out there about us. We are all zebras here & some are "uber" zebras!! It's just been something on my mind that I had to share. Thanks for listening.

 

Rest in peace dear Natalie.

 

Hugs,

Cindy