I am 29 years old. I was also diagnosed with BWS when I was a baby. Up until this day, my parents know so little about this syndrome. I did not have that much complications when I was a baby or infant. I I was born in Peru, and there was so little info at that time. As a teenager, I began to experience UTIs. Still did not know much about it. I never though it was connected with BWS. Some doctors do not put much attention to patients. Later on I was diagnosed with huge amounts of kidney stones. I saw several urologists. All of them told me my kidneys were making a lot of stones. I was going to have more UTIs there is nothing that I could do. Just to drink water and cranberry juice. Just this year, I had to be a little bit more aggressive with my urologist and ask the main reason of my kidney stones formations and my other problems. I had to talk to the supervisor in order to receive a response. That same day, my urologist told me I had Medulla Sponge Kidney Disease. That explained everything. And because diagnosis was so late, I already suffered a lot of UTIs and the bacteria had gone so resistant to many antibiotics. I began to do a research on my own. I discovered that MSKD is one of the risk for having BWS. My main point is, if you have a child with BWS, there is a great percentage that the child will not have much difficulties with health issues; however, as a parent is your responsibility to be alert and record all the signs your child has. Do the follow ups with the doctors. And do your own research because most doctors will not do it for your children. Thank God I am well now. Still learning a lot about this disease and syndrome. Still new to this. Still finding my own heal process.
I have the same! I was diagnosed after an ultrasound when I was a teenager (I was experiencing pain in my side and shoulder) and completely unrelated, they noticed several cysts in both kidneys.
Thank you so much for sharing your story. As a student in a medical profession, I was struggling to understand BWS. I will remember Delilah's story always.
I am 29 years old. I was also diagnosed with BWS when I was a baby. Up until this day, my parents know so little about this syndrome. I did not have that much complications when I was a baby or infant. I I was born in Peru, and there was so little info at that time. As a teenager, I began to experience UTIs. Still did not know much about it. I never though it was connected with BWS. Some doctors do not put much attention to patients. Later on I was diagnosed with huge amounts of kidney stones. I saw several urologists. All of them told me my kidneys were making a lot of stones. I was going to have more UTIs there is nothing that I could do. Just to drink water and cranberry juice. Just this year, I had to be a little bit more aggressive with my urologist and ask the main reason of my kidney stones formations and my other problems. I had to talk to the supervisor in order to receive a response. That same day, my urologist told me I had Medulla Sponge Kidney Disease. That explained everything. And because diagnosis was so late, I already suffered a lot of UTIs and the bacteria had gone so resistant to many antibiotics. I began to do a research on my own. I discovered that MSKD is one of the risk for having BWS. My main point is, if you have a child with BWS, there is a great percentage that the child will not have much difficulties with health issues; however, as a parent is your responsibility to be alert and record all the signs your child has. Do the follow ups with the doctors. And do your own research because most doctors will not do it for your children. Thank God I am well now. Still learning a lot about this disease and syndrome. Still new to this. Still finding my own heal process.
I have the same! I was diagnosed after an ultrasound when I was a teenager (I was experiencing pain in my side and shoulder) and completely unrelated, they noticed several cysts in both kidneys.
Thank you so much for sharing your story. As a student in a medical profession, I was struggling to understand BWS. I will remember Delilah's story always.
Lovely family.
My baby also has BWS
My baby las his ALT and Ast high always, how do I know if he has AFP high? How to check that ?
How help us wss Foundation, from Bangladesh
Hello
How is Delilah? My baby has bws also
How you came to know. What are the symptoms. Can you please reply
Hi! Delilah is a family friend of mine. She’s doing great, very healthy! Thanks for asking! ♥️
Can we have a chat?We suspect bws in both our kids
You need to contact a doctor