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Do any of you have experience with Tuberous Sclerosis?

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My sister, who is 37 years old, has TS. Yesterday at Thanksgiving Dinner I noticed a fatty area below her neck (buffalo hump). While she is quite overweight, I've not noticed this before; it's odd, not like a normal pocket of fat. I'm googling to find if it's possibly a side effect of meds, but all I keep finding is Cushing's Disease.


If you have a relative with tuberous sclerosis, have you noticed anything like this? I'm trying to determine if it's possibly long-term anti-seizure med use or if she's got something else going on in addition to all the rest.


Thanks, (and I know this is a long shot sort of question, but you all are so vastly knowledgeable!)

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Could it be from long-term corticosteroid use?


I asked my mom, and all she's taken for years is Depakote. Thanks for the suggestion, though.





Just bumping, since I posted over Thanksgiving...wondering if anyone else might have experience with this disease...


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