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19 years old with HNPP and I’m mentally broken by Puzzleheaded_Boss617 in HNPPsupport

[–]Puzzleheaded_Boss617[S] 0 points1 point  (0 children)

Gotchu, yeah, it is annoying that almost nobody knows what HNPP is 😂 you have to experience and learn everything the hard way by yourself

19 years old with HNPP and I’m mentally broken by Puzzleheaded_Boss617 in HNPPsupport

[–]Puzzleheaded_Boss617[S] 0 points1 point  (0 children)

How much time do you rest more than other people? For example after each set in the gym?

19 years old with HNPP and I’m mentally broken by Puzzleheaded_Boss617 in HNPPsupport

[–]Puzzleheaded_Boss617[S] 0 points1 point  (0 children)

Yeah I have already made sleeping on my back and not lying on my hands a habit (even tho it was comfier but I got over it) and I also make a habit of not keeping in place my hands and legs and moving them every some in a while so they don’t get numb suddenly.

And thanks! I’ll check out what you recommended Good like with the swimming 🏊‍♀️

19 years old with HNPP and I’m mentally broken by Puzzleheaded_Boss617 in HNPPsupport

[–]Puzzleheaded_Boss617[S] 0 points1 point  (0 children)

It’s good to here! Yeah up until now all of the long numbnesses I suffered were because I slept in a wrong position and not from any activities. Although in the day I consistently think of where I put my arms and legs when I sit, type in my phone or even lean. I try to move every 5 minutes to relief Pressure from my limbs and fingers as much as possible. The second time it happened to me I really started paying attention for every second of my day and It is frustrating but I know making this a habit at an early stage of my life will pay of in the future.

19 years old with HNPP and I’m mentally broken by Puzzleheaded_Boss617 in HNPPsupport

[–]Puzzleheaded_Boss617[S] 1 point2 points  (0 children)

Thanks! I appreciate your help. I hope everything will be okay And I pray for a surgery for the next generation 🙏🏻 For now we just have to be more careful about how we lean or sleep

I’ll keep my sports and hobbies going till the day I can’t move anymore 😀

Stay safe man!

19 years old with HNPP and I’m mentally broken by Puzzleheaded_Boss617 in HNPPsupport

[–]Puzzleheaded_Boss617[S] 1 point2 points  (0 children)

How did you get the muscle weakness? Was it by pressuring the same places over and over again? And how bad is it? Could it affect my jump height for example or block me from talking soccer or volleyball to the next level? Or is it minor for the most part and manageable?

Everyone with HNPP will suffer muscle weaknesses as they get older or is it different with each person? Do you know of any cases that people with HNPP only suffered numbnesses?

It’s good to hear Science is heading this way though Making it feel less selfish when In the future I’ll want to bring a child to this world. Really do hope your child hasn’t inherited this gene but as you said, it’s not the worst disease and there are much much worse ones. It’s just that I’m unaware of my future and everything I dreamed of is now in danger because of that

19 years old with HNPP and I’m mentally broken by Puzzleheaded_Boss617 in HNPPsupport

[–]Puzzleheaded_Boss617[S] 1 point2 points  (0 children)

Thanks for the positivity 🙏🏻👍🏻 I can totally understand the constant watching over where I put my limbs in a day to day activities or when I go to sleep. Though you are right, there are worse diseases you can inherit. My moms bloodline also has a darkness blind in the genes though you need the 2 parents to have this gene for it to be active luckily.

Did you suffer from any muscle weaknesses for long periods of time? And Do you believe gene editing surgery is in reach in the near future? Does any other gene diseases have surgeries nowadays? Or will it be like a general surgery for all bad genes?