American Association of Kidney Patients

Hello all,

I noticed that the AAKP was looking for story ideas and so I sent the editor the following information about MSK:
"So glad you asked!... I would love to see a series on Medullary Sponge Kidney Disease. As one who suffers from the painful effects of MSKD (chronic kidney stone formation and the damage this causes over time), it has been my experience (and of others also) that more information needs to reach the medical professionals that care for us. Many nephrologists and urologists don't know how to help their patients bring this disease under control and then manage it. Emergency room physicians, more often than not, meet us with blank looks on their faces when they hear "Medullary Sponge Kidney Disease". They don't know what this is, nor why we're back again so soon with excruciating pain from yet "another stone"; many of us have been treated like drug-seekers because of the chronic nature of this disease. Little is known about what causes the congenital kidney defect that brings about MSKD--awareness of the necessity for research is needed so physicians and patients can understand how this disease works, how to treat it effectively, whether this defect can be prevented, and maybe even find a cure. I am thankful for the forums that are out there to connect with others who live with MSKD. It is so helpful to be able to compare notes, to learn what "normal" is living with this disease, and to encourage one another in the difficulties it brings. There is a disconnect, however, between the patient and physician as far as information goes, and I believe that a highly respected and recognized organization such as yours could help bridge that gap."

His response was, " Thanks for responding to our Facebook request. I will start soliciting physician responses to your request, but if you have a suggestion on a doctor or an organization I can reach out to, please forward me their contact information."

Do any of you know of any doctors or organizations that would be willing to discuss MSK? I'm hoping to get a story about our condition out there.

Thanks,

Kayla

[ChitChatNine]

My Urologist is pretty prominent.  I'm going to send you a PM :)

C~

[bambamm]

THANK YOU for taking the time to do this!!!! I too am desperate for some sort of positive forward movement in treating this disease. I actually sent an email in to the TV show "The Doctors", but have not gotten a response back.

We all have got to put our heads together and come up with a way to get the medical profession to listen to us. I think that MSK needs to be treated as a "specialty" disease, much like cancer, rather than just lumped in with urology in general, and we need specialty doctors to treat it. Please keep us updated on any information and/or positive feedback you get from this.

Thanks,
Mary

[ChitChatNine]

Mary .. all great ideas/thoughts .. please keep us posted!!

C~