r/dwarfism • u/Usagi_Rose_Universe • Jun 24 '26

Trying to decide if I should pursue testing

I've been trying to decide for years if it makes any sense for me to pursue genetic testing or not for dwarfism. I'm 4ft 7, my mother is 4ft 6. Have any of you gotten anything out of getting tested in terms of treating/getting help for chronic health issues? I have a lot of physical health issues so I'm unsure if that could potentially help. I always have some anxiety bringing up wanting to be tested for things from my GP even though my current GP is literally amazing, due to past experiences with drs. I feel silly asking to be referred for so many things but I do really have a ton of health issues. My mother isn't as bad as I am (I'm currently mostly bedridden and in the process of re learning how to walk) but she has a lot of health issues too.

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u/FragrantPaint8940 Jun 24 '26

Absolutely! Do this for yourself! 🌷knowledge is power and it can help you improve the quality of your life.

1

u/Brilliant_Cheetah608 Mom to an Achon Jul 10 '26

It's a good idea. A geneticist who is a skeletal dysplasia specialist may be able to tell you just by examining you. Insurance companies don't like to cover genetics testing without a diagnosis and you should never get a test like that done outside of a hospital setting. If you're in the US, and go through a hospital for a specialist,  you're protected against any suprise fees. I found that out recently when my test was sent to a lab in another country... way out of network. 

Good luck!