- Medullary Sponge Kidney
- Interviews
Shannon Bauer's interview
How did all start?
Birth defect of the kidneys.
Do you already have a diagnosis? How long did it take you to get it?
19 years
For what medical specialties have you been treated? What has been the most useful specialty for your?
Nephrologist and Urologist
What has been the most useful thing for you so far?
Kidney Stone Prevention
What have been your biggest difficulties?
Chronic flank pain!
How has your social and family environment reacted? Have your social or family relationships changed?
Some are supportive while many do not believe the truth behind Medullary Sponge Kidney (Cacchi-Ricci) that it is an extremely painful debilitating disease to survive.
What things have you stopped doing?
Consuming too much sodium and protein in my diet is a must with this disease.
What do you think about the future?
Hopeful there will be more research hosted and studies ran to confirm the truth of this disease. Many will not acknowledge that our symptoms are real despite the evidence!
So far, which years have been the best years in your life? What have you done during them?
Birth until the age of 19 then my symptoms progressed.
What would you like to do if you didn’t have your condition?
Travel!
If you had to describe your life in a sentence, what would it be?
Being a voice for those who also survive this rare kidney disease.
Finally, what advice would you give to a person in a similar situation?
Research your doctors and if you are not content with your treatment plan seek out a new medical team.
