Rare Disease

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What small actions can you take today to make it easier for you to relax this weekend?

Time for rest and relaxation is important! Let’s prepare to take it easy (if possible, even for a moment) for the weekend by getting some tasks, responsibilities, or chores out of the way.

Mighty staffer @xokat is going to try to catch up on a few loads of laundry, drop off her library books, pick up her prescriptions from the pharmacy, and restock on a few groceries.

What about you?

#52SmallThings #selfcare #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #Disability #RareDisease #Caregiving #Autism #ADHD #Grief #Cancer

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I Can’t Believe It…My Latest Lumbar X-Ray Uncovers a Missing Diagnostic Link in My Story

I have some really amazing and interesting news…I’d even go as far as saying exciting and life-changing! Longtime followers of my blog will know the diagnosis of the rare bone disease “Osteopetrosis” has always been bounced around since my femur pathologically broke in 2014.

My Orthopedic Specialists were confident in this diagnosis based on clinical symptoms (pathological bone breaks and patterns of my bone they examined through surgery), plus my blood tests and bone density tests always showed low bone turnover and high bone density……key Osteopetrosis disease markers. My endocrinologist at the time didn’t want to confirm the diagnosis for various reasons so it remained a “maybe” situation.

I received my spinal X-ray report this week, which was done with the latest MRI/Bone scan. The radiologist was so thorough on the day, and the Dr who has written the report is one of their senior ones. I didn’t think much would come from the humble X-ray.

However, to my surprise, something new cropped up that has never been reported before, and this is what it says:

“The pedicles appear slightly short suggestive of a degree of congenital canal stenosis. “This means I’ve had since birth.”

So, I looked up some credible research papers on the topic, and all report it’s caused by “Osteopetrosis”!! Bingo….it appears we’ve been right all the time.

It just makes everything make sense, and it explains why, as an adult, I am so disabled with it. It’s also quite a miracle it took as long as it did to progress to this level. It would appear I have the intermediate type, which is a mixture of the dominant infant form and the milder childhood/adult version and explains the severity of my disease in adulthood. I have been truly blessed to have lived 48 years of a full and amazing life before it really hit me.

With the infant Osteopetrosis aspect in my disease, I could have died either as a baby or in early childhood. It’s just incredible the way I have been protected.

Haunting Memories
I’ve always had two standout childhood memories, which are as clear as if they happened yesterday. The first one is surgery to have numerous baby teeth removed. I was about 7 or 8 years old. I was put under anesthetic for the procedure, but I remember waking up feeling so distressed and my mouth bleeding profusely. I also remember wanting my dad who was unfortunately at work. I’m sure that didn’t make my mum feel great, but dad was the extra caring parent, so my response made sense. Interestingly, one of the major symptoms of Osteopetrosis is that teeth come in later than normal, so another diagnostic box ticked.

The other memory is an even earlier one. Osteopetrosis in children makes walking painful due to spinal stenosis and bone pain, among other things. I remember my mum wanting me to walk a relatively short way from our home to her friend’s house. I just couldn’t do it, so she put me in a pram. I was only 4 years old, but I remember feeling so embarrassed as I felt I was far too old to be in a pram! I also remember I sadly had no choice.

Does A Diagnosis Make a Difference?
The diagnosis doesn’t change the outcome in terms of treatment or cure. There isn’t any, but it answers so many questions for me, and that’s priceless! Everything I’ve experienced now makes so much sense.

Yes, it’s rare. Yes, it’s a crazy disease. Yes, it’s progressive, and I’m acutely aware of the ramifications of that as my symptoms and my pain levels increase.

But I now know why, and for some reason, that knowledge removes its power over me. It’s part of me rather than being something attacking me from nowhere. When asked what’s wrong with me, I will now simply say: “I have a rare disease called, Osteopetrosis! “

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What are you trying to be more intentional about these days?

Mighty staffer @xokat recently heard about something called the “intention cycle” — here are the five phases of it: Choose a word or phrase, set an intention around it, create specific goals, establish a routine to achieve those goals, and form good habits to keep it going.

Is this something you practice regularly? Does doing something intentionally give you a framework to make positive changes in your life or do you feel like it puts too much pressure on you? (Both experiences are valid, by the way!)

💫 P.S. If you need a hopeful read, here’s today’s pick: How Changing Your Mindset Can Open Up New Possibilities for Healing

#MightyMinute #CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #RareDisease #Disability #Caregiving #Grief #Parenting #Cancer #Autism #ADHD

How Changing Your Mindset Can Open Up New Possibilities for Healing

"'Change your mind, change your life' may seem like an overused euphemism, but there is nothing truer."
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Practice self-love

So much of our pain comes from the way we treat ourselves. We do whatever we can to prevent other people from saying bad things about us, but we don't spend too much time stopping ourselves from thinking bad things about ourselves. Who is ready to make a change and honor themselves with kindness, gentleness, and support?

Also, I started making video responses to your mental health questions as a way to better share advice with you all.

The last video I made was in response to @shreakinwarrior22016 who asked about how to deal with misconceptions about your specific mental health challenges. If this information is relevant to you, you can check out the video here:


Otherwise, if you have any questions about mental health, please post in my group and I will try to make a video response specifically for you.

~ Thanks to all. Thanks for all. ~

Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment a simple reply or heart, I’m sure they would really appreciate your team support. What do you say?

#MentalHealth #MentalHealth #Depression #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #EhlersDanlosSyndrome #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Suicide #MightyTogether

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Deep breaths 💖

Take a moment and think of how you would treat your best friend on their worst day.

Now treat yourself like that 💕💕💕

You Are Worth Time and Care! You Are Worthy of help! You deserve contentment and joy! Happiness is for you!!

Please take care of yourself ❤️
You know your struggles and troubles best- you also know your favorite things in life 😉
Plan some good things you can look forward to each day, each week, and each month.

Looking forward to life and living is easier when you are excited for something good you know is in the future.

Gentle hugs ✨️ You are Mightier than you realize!

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #BoneSplints #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #Grief #HypothyroidismUnderactiveThyroidDisease #Headache #Insomnia #Lupus #Lymphedema #MightyTogether #MentalHealth #MemoryLoss #Migraine #CheerMeOn #RareDisease #SuicidalThoughts #Scoliosis #ShinSplints #musclespasms #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PTSD #plantarfasciitis #PanicAttacks #PanicAttack #PsoriaticArthritis #Psychosis #RheumatoidArthritis

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We all have these times in our lives. Many are no doubt in this same place right now too.

I was there for almost 2 decades. Not including the 13 years I suffered in pain, alone before. I found peace in my religion as I purposely put one foot in front of the other, often not literally as my body quit on me in ways no doctor understood.

Finally a two months ago I got a rheumatologist who understood and was intelligent and not just guessing. And he wasn't going to give up like the rest of them. And then I finally got a pain doctor who wasn't terrified of medicine and at long last I got the REAL dose I needed. It has been such a long time coming!

So trust that life has things in store that others say will never happen. Trust! Have faith! Dare to dream and hope!
Become the exception, someone who doesn't settle and fight on for that happiness!

When I first found this forum I posted about how I was in so much pain I wanted to die. And in a response from a friend, one who I looked up to and still do, he said: what if tomorrow they come up with a treatment or cure for your condition?? Wouldn't you wish you held on until then?

Life is better when we hope. We live better when we hope!
Don't settle dear Mighty friends. Things will improve, you just have to give time, time.

In the scriptures there is a story of a man who suffers unable to walk for 38years. And then Christ heals him.
I can't help but think how very hard it would be so long ago to exist like that. Nowadays we have running water, toilets, walk-in showers and baths with hot water. We have refrigerators and food that we can buy pre-sliced. We have cars and various Taxi options. We have online shopping and dollar stores! And snack foods that stay good for a long while.

Even in bad health and struggles, we are very blessed. Think of your ancestors who no doubt had problems that you have but no name to put to it, perhaps like yourself. The world is more understanding even if they don't truly understand it all.

You, dear Mighty friend, have good things that pass your way. Open your eyes to them! Allow them to carry you on your way as time passes and even better things at last find you as you so very much deserve ✨️
Hold on! ❤️ each day brings you ever closer ❤️

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #BoneSplints #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #Grief #HypothyroidismUnderactiveThyroidDisease #Headache #PosturalOrthostaticTachycardiaSyndrome #Insomnia #Lupus #Lymphedema #MightyTogether #MentalHealth #MemoryLoss #Migraine #CheerMeOn #PTSD #Psoriasis #PanicAttacks #PanicAttack #Psoriasis #PsoriaticArthritis #plantarfasciitis #RareDisease #RheumatoidArthritis #AnkylosingSpondylitis #SuicidalThoughts #Scoliosis #ShinSplints #Upallnight #musclespasms

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