Rare diseases awareness month

Nat09

Thanks @frenioz00, so sorry about your mom. It must have been a difficult decision not to have children and you shouldn’t have to explain yourself to anyone, sometimes people don’t realize asking such personal questions can be painful. Stay strong my friend.🥰

Crimson_Dawn

First of all, I want to thank all of you for sharing your stories. I read about people - even young children - having these rare diseases and having their lives changed forever. I never actually physically cry over them, but it makes me really sad and think about how I take my health for granted sometimes. There are a few things that run in my family. Nothing that you would call “rare” perhaps, but diseases nonetheless. I’ve watched as family members slowly die with dementia and couldn’t even remember who I was. I won’t go into specifics, but I love that people like @Nat09 and @frenioz00 are stepping up and bringing awareness to these rare diseases. Hats off to all of you!

firebombmarkus

Wow! I just read the whole thread! Thank you so much for bringing attention to something so much important @Nat09 It's really amazing how something like this Community can connect people so much 🙏🏻 Also thank you @frenioz00 @BQIK@BQN537 for having the courage to support @Nat09's idea and sharing your stories too. As much as it makes me sad to know some people suffer more than others, it also makes me happy that they can find their place with people who only share about the love 💜

@frenioz00 I am always amazed by the audacity of people who ask private questions. If I want to share something, I will share it myself, there is no need to ask. I am almost 33 and I still listen to the same questions every day like "when are you going to get married", "when are you going to have children", etc. even though I am gay 😅 So whenever I've been asked that I just say "It's not your business". It's nobody's business but mine!

As for rare conditions, I have to admit that most of these you guys mentioned I am not familiar with and I had to Google them. I have been diagnosed with something more common and that's epilepsy. As a matter of fact, I take pills two times a day but I have seizures rarely. The last one was in July and it was caused by the pain when the dentist tried to pull out my tooth while the anesthesia didn't numb it properly. My results are good, MRI is fine, EEG is fine and now I drink pills only as a precaution. My state is mostly psychosomatic and I feel better since I started working on my inner peace and letting go of things that don't serve me anymore.

One last thing, I would like to recommend you check Anthony William aka Medical Medium as I think you will find a bunch of great info regarding rare health conditions and how to treat them. I really love that guy and am very grateful for him 🙏🏻💜

lulu13

You rock! @firebombmarkus 🥰

firebombmarkus

@lulu13

Nat09

Thanks @Crimson_Dawn, I appreciate your support, thinking of those young kids going through this is heartbreaking, I know one of my kids has Ehlers Danlos ( he doesn’t know yet but he’s hyper flexible like me ) , maybe he won’t be as bad as me🤞🏻and I really hope he doesn’t have Arnold Chiari,

@firebombmarkus, I love this community so much , everyone is so understanding and supportive of one another, it’s beautiful. I’m glad you have your seizures under control, it can be dangerous. I also meditate ( try every day) it has helped a lot to release the stress and bad energy. I used to stress out so much, I learned the hard way, it just doesn’t pay, things will happen and you can’t stress over things you have no control over. Hope you remain seizure free, good luck and thanks for your support 🥰

firebombmarkus

Thank you @Nat09 You are the sweetest 🤗 Yes, it can be dangerous but it's better as I have released a lot of stress and unnecessary stuff in my mind. It's crazy how big mess is in our brains and we are not even aware of it. That's where meditation helps. You learn to choose what you think and what you say, which is as much important. Take care and see you around 🥰

bearwithme

Thank you so much for being so brave to share your stories @Nat09, @frenioz00 (for some reason I didn’t get your tag either), @BQN537 and @firebombmarkus.

@Nat09 I actually am very familiar with Ehlers Danlos since I have a family member who suffers from that and POTS.

These diseases affect many aspects of your daily life that most people can’t even comprehend and I admire and respect each one of you so very much!

It’s amazing how these games and this community has brought so many people together who are living with various challenges and they come here and become part of this wonderful family and find others they can relate to and share with.

Thank you again for sharing your incredible stories. You all are awesome people and I am sending lots of hugs and love your way. 😊🥰💕🐨

Nat09

Thanks @bearwithme, it’s very true about EDS( there is 13 different types, I have type 3) I haven’t seen a cardiologist yet but I’ve been dealing with chronic tachycardia for a couple of years now, I consider a shower a sport now 🤣Best wishes to your family members, take care, Nat. 🥰🐰🦓

KingChewy

@Nat09, @frenioz00 & @BQN537 - this community never ceases to amaze me. We all come from different walks of life, have our own struggles to bare and yet, you can met a stranger in here one day and tell what an amazing, caring and compassionate person they are in a matter of moments. Each of you represent so much to me and your determination to spread joy while in pain is so beautiful it brings me to tears. Big hugs and thoughts for you all 🤗🙏🏻