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What's your condition? (Friendly discussion)

User Profile: Jem7Cups
Jem7Cups November 23rd, 2019

Hello there! It's EmpatheticJem!

I've seen a few threads on this site and have commented on some. But I thought it'd be cool if we could introduce ourselves and (if comfortable) discuss our disability and answer any questions people may have.

So to start, I have nemaline myopathy. It is a rare genetic disorder that makes my muscles weak and my joints loose. It also means that I am in chronic pain.

It doesn't get me down though! It is a part of me, and I wouldn't want to live without it 💕

Tell me about your beautiful selves. I'd love to hear from you and provide whatever support I can.

We're all in this together.

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User Profile: pioneeringPeach2035
pioneeringPeach2035 April 25th, 2020

I have Hashimoto's, hypothyroidism, chronic urticaria, and a few undiagnosed things my doctors are trying to work out right now.

User Profile: plumPineapple916
plumPineapple916 May 5th, 2020

I have Rheumatoid Arthritis, Migraines, kidney stones, Sjogren's disease, sleep disorders, and previously had a mild cancer. I used to be able to cope well, always taking it as it came but I have recently had a worsening of my conditions with a lot of damage and pain and I am finding it so difficult to cope with. It feels like it won't ever end. I have two young children and I'm finding it very difficult to be the parent I would like to be. I also help care for my mom who also has many conditions. I just want to feel better. We are struggling to find a treatment that is working.

User Profile: reliableApricot7972
reliableApricot7972 May 9th, 2020

I have hip dysplasia - it's a condition where the 'ball' of my hips don't fit in the socket properly so is over halfway out. I have been told it's not severe enough to give me any medication to help with the pain, although I have pain every day, sometimes to the point I can't get out of bed. I have been on crutches many times throughout my life due to my hips dislocating - and I know this will continue many more times.
I have also been told my many medical professionals that I will struggle to carry a child - if I do chose to become pregnant, I will be in a wheelchair for the majority of the pregnancy due to my hips not being able to carry the weight, and for safety precautions should they dislocate. I've also been told I will need to have both hips replaced by the time I'm 25 and will probably get arthritis very early on in my life.
It's a pretty rubbish condition - one I've had to make lots of adaptations for throughout my life, but am totally determined to live my life to my absolute fullest, this will not beat me!

User Profile: DistortionHeart
DistortionHeart May 10th, 2020

high functioning autism schizoaffective disorder depression anxiety

2 replies
User Profile: dhabib
dhabib May 24th, 2020

@DistortionHeart I have autism and anixety disorder and depression. And stress I would like to tell you my story and what I suffer struggle with it hurts

1 reply
User Profile: DistortionHeart
DistortionHeart May 26th, 2020

@dhabib

You can tell me I'll read over it.

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User Profile: PinkDahlia22
PinkDahlia22 May 17th, 2020

@Jem7Cups

🥄Fibromyalgia

🥄ME/CFS

🥄POTS

🥄Hypermobility

🥄Obscure Audiotory disorder

🥄Meres-Irlens

🥄Epilepsy

🦄Being tested for MS and FND

User Profile: StrongSpoonie
StrongSpoonie June 1st, 2020

Ankylosing Spondylitis

if you want to know more, I'd love to share!

User Profile: quickwittedHuman9516
quickwittedHuman9516 June 5th, 2020

I have Chronic Regional Pain Syndrome (CRPS), a neurological movement disorder, several types of migraines, a mild form of EDS, depression and anxiety, as well as a couple of other smaller conditions. I've been dealing with most of these for the past 6 years, with the first two just starting to become worse over the past year. I'm still struggling to accept my diagnosises and what they mean for my future, especially now that I just graduated high school.

I have been diagnosed with ligma and sigma, Lee Ghandi who is my doctor (full name is Dr. Lee Ghandi's balls) said "sigma or in its full name sugma balls is a rare condition , you also have ligma, also known as ligma balls"

User Profile: orangeicebox
orangeicebox June 6th, 2020

I have lipid storage myopathy. It's a degenerative muscle disease. I used to be super fit and healthy. To not be able to simply tie my hair like before or pick up something I dropped embarrasses me. Frustrates me. I hide a lot of it, especially to people who have known me longer, known me when I was better.

User Profile: princewhowaspromised718
princewhowaspromised718 June 9th, 2020

Hello,

what I have is Friedreich's ataxia is a rare genetic disease that causes difficulty walking, a loss of sensation in the arms and legs, and impaired speech. It's also known as spinocerebellar degeneration. The disease causes damage to parts of your brain and spinal cord and can also affect your heart.

Which basically sums everything up for me lol. Over the past few years, the mobility in my hands and my hearing has significantly dropped. I use to be an avid video gamer, but that obviously had to change. I am also a very passionate writer and absolutely refuse to give that up, so I rely on dictation devices to help me type. It's a very frustrating and exhausting disease that I wouldn't wish on my worst enemy, but I'm making the most of it.