I think the video came from mystery diagnosis before they cam to do the shoot for the episode they send someone to interview my family. It is not a guy you see that is my cousin Roxanne.
@montanerfan fortunately I do not have CTX. Although I have not been tested to see if I am carrier which would be a good idea because I plan to have children. Also in this video they never give the results of Alyssa's testing. She does not have CTX but she is a carrier.
I would just like to say thank you all for your concern. Tina is my aunt and angela is my mother. For many years my mother and aunt had no clue what was going on with their bodies and now b/c of dr steppie and his determination we have an answer. Mystery Diagnosis was a great opportunity to inform people of CTX but they fail to mention that my mother and cousin along with my aunt have been diagnosised.
@ossama2000il I'll say! They didn't really explain the disease though. The most important thing is CTX stands for Cerebrotendinous Xanthomatosis. It's genetic. What happens is there's a mutation in a gene that's responisble for making cholestrol. Instead of making cholestrol, it gets convereted to colestanol a toxic acid. It builds up in the body interfering with system function.
I saw this family featured on a Mystery Diagnosis episode. This is so sad. :( What stuns me the most is people are walking with CTX and don't know it. I pray for the Ancar family.
I think the video came from mystery diagnosis before they cam to do the shoot for the episode they send someone to interview my family. It is not a guy you see that is my cousin Roxanne.
nmancar 1 year ago
@nmancar Probbably be a good idea to get genetic testing. Where is this video from? And who's the guy with the xanthomas, Tina's cousin?
montanerfan10 1 year ago
@montanerfan fortunately I do not have CTX. Although I have not been tested to see if I am carrier which would be a good idea because I plan to have children. Also in this video they never give the results of Alyssa's testing. She does not have CTX but she is a carrier.
nmancar 1 year ago
@nmancar Do you have CTX?
montanerfan10 1 year ago
I would just like to say thank you all for your concern. Tina is my aunt and angela is my mother. For many years my mother and aunt had no clue what was going on with their bodies and now b/c of dr steppie and his determination we have an answer. Mystery Diagnosis was a great opportunity to inform people of CTX but they fail to mention that my mother and cousin along with my aunt have been diagnosised.
nmancar 1 year ago
@ossama2000il I'll say! They didn't really explain the disease though. The most important thing is CTX stands for Cerebrotendinous Xanthomatosis. It's genetic. What happens is there's a mutation in a gene that's responisble for making cholestrol. Instead of making cholestrol, it gets convereted to colestanol a toxic acid. It builds up in the body interfering with system function.
montanerfan10 1 year ago
@montanerfan10 ohh my god,hard to see this.
gosh that is so terrible,i really hope they will be fine.
ossama2000il 1 year ago
I saw this family featured on a Mystery Diagnosis episode. This is so sad. :( What stuns me the most is people are walking with CTX and don't know it. I pray for the Ancar family.
montanerfan10 1 year ago