Adult Issues in Fragile X Syndrome

[@SongbirdAlom]

thank you for this! There is so much info on Fragile X centering kids, or are just videos focusing on weepy parents begging for a cure. I've been trying to find out information on ADULTS with FXS, without making them human tragedies. This was helpful.

[@NFXF]

We've been addressing the topic of adults with FXS more and more, and am glad to hear we were able to provide something useful for you! If there's any information you're looking for specifically, please don't hesitate to contact us: [e-mail]

[@Martin_Wood_]

I am in need of help. My nephew has fragile X and just turned 18. He is now having psychotic episodes and delusions and he says he is talking to family members that are dead and he is always thinking someone is trying to kill him . He has tried to hurt his sister and is saying some sexual explicit things. We are located in eastern Ohio close to Steubenville. We have had him at the hospital and they do not have the facilities to help him. Does anyone know of anyone that can help us? We are in need of help so bad . We are afraid he is going to hurt himself or someone else. He is a 18 years old and this all just started after he turned 18. Please if anyone knows anyone that can help please leave a comment and i will contact them.

[@madasti136]

Hey, so sorry to hear that. But I noticed this was 11 months ago, did you find anything that helped him improve? My brother is 22 and has fragile x and just recently he started talking to himself, saying he wants to kill himself, self harming himself, and overall seems to be at a rapid decline with basic things as well such as sleep and attention spans. We are also desperate and aren’t sure what to do anymore, any help would be appreciated

[@Martin_Wood_]

@@madasti136 yes we got him the help he needed. Hes allot better now.

[@thecrookedtrail679]

What are the differences between the regression you talk about and Autistic Catatonia, especiallygiven the common co-occurrence of FX and Autism?

[@thecrookedtrail679]

If the life span with FX is "normal" and the average life expectancy of Autistic people in NSW, Australia is 40 years, what are you missing? I have some thoughts if anyone cares 🙏🏻

[@MrKunal1503]

what??

[@kalyasaify]

Yes!!! Dude she knows nothing and is full of cluster b issues. This should be banned tbh, this is NOT OK!!!!! like with we are the definition of a normal brain

[@soranightstorm9262]

So is my shutting down when I try to struggle from a abuser normal cause I don’t know what else I can do without hurting the person?

[@soranightstorm9262]

I do have high anxiety an that was apparent with decisions I had made to avoid a lot of issues in my life

[@kalyasaify]

Dude don't even try. The mass is weird and beyond stupid. This is just horrible as someone autistic 😢

[@banksiasong]

Would welcome the issues of healthy sexuality and consent at some stage.

[@SageGarlandSingerSongwriter]

Weird word choice with continually repeating "the patient."

[@Swabyla92]

How so? The phrase patient means that that individual is being treated and receiving support?

[@SageGarlandSingerSongwriter]

@@Swabyla92 Because people with Fragile X do not exist purely as patients and have lives outside of the medical system.

[@cazzawazzadingdong5139]

Patient: a person receiving or registered to receive medical treatment. All diagnosed fragile X individuals would be recieving ongoing treatment and care to some extent from health services for the entireity of their lives. I think this qualifies them to be known as patients. Semantics, however, are irrelevant. You can focus on semantics if you like, whilst others (like the women giving this conference) concentrate their attention on understanding the condition better to provide better treatment and therefore increase quality of life in those living with Fragile X

[@kalyasaify]

​@@cazzawazzadingdong5139there is no need for cure. We're actually more normal than you neurotypicals. I'm amazed by the stupidity of all. This was the worst video so far, she's so toxic and uneducated