new EDS type?

has anyone been told that they have a different type of ehlers danlos than the 13 types that are commonly known? i’m 22 years old, and i was diagnosed with ehlers danlos when i was 12 years old. after 3 years of push and pull with doctors, i finally got a genetic test done and it was confirmed that i had the genetic mutation for ehlers danlos. the geneticist told me, however, that i had a new type they have never seen before. and that my mutation was completely different than anything she had seen before. she said i definitely carry aspects of classic hyper mobility types, but that i also carry aspects of the vascular type.

she asked my mom if our family would be okay with partaking in their medical research on it, but my mom saw that my brother and i were so sick of being poked, prodded, operated on for our injuries, and asked a million questions by doctors all the time, and she told them no. my mom has a copy of my genetic results and diagnosis, im hoping to get copies of myself soon and maybe reach out to someone about it. just curious if anyone else has experienced this!

EDIT: okay i dont know why the time frame is so confusing to everyone because i said i was 12 when i was diagnosed and that my mom decided for me that we were not going to do research because i was a kid. i was told all of this when i was diagnosed 10 years ago and im not exactly sure what any of it meant. i just know that i was told i had ehlers danlos, but a different variant than the common ones they’ve seen and thats why i have hypermobile and vascular crossover symptoms.

i am now curious if anyone else has been told this since that was 10 years ago and i want to learn more about it. i’m not asking for your guys opinions about my diagnosis and to doubt my diagnosis 😐 im just asking if anyone else has experienced this. if not, then kindly move on from the post 😭