38 Diseases That Are The Worst Of The Worst

ALS. Lou Gerig disease. Slowly takes away your ability to move your arms, legs, eyes, takes away every muscle in your body. Your ability to talk, eat. But you have your mind and you experience the decline but can't do anything about it. Horrible disease.

My cousin had Alexander's disease. She was born totally normal, healthy, bright. Around 2 she started having seizures. By 6 she needed a walker. Wheelchair bound with a shunt in her head by 12. Couldn't speak by then but she understood what you were saying. Diapers by then, a feeding tube. Stopped being able to draw. She survived to the age of 27, feeding tube removed, after being given a life expectancy of five, spending her entire adulthood bed bound. Even at the end she could nod or shake her head to questions, she smiled seeing her favorite actors on TV, knew her family, but her brain was mostly liquified .

Fibrodysplasia Ossificans Progressiva (FOP). It's a rare genetic disorder where muscles, tendons, and connective tissues gradually turn into bone, progressively limiting movement and creating a "second skeleton" that traps the body.

Prion disease. Prions are misfolded proteins that can cause other proteins to misfold. They are not alive, cannot be eliminated, and attack brain tissue. Mad Cow Disease is one varient.

Rabies


you can be asymptomatic for *years* (depending on where you get infected), not realizing that you have it, and the moment you start feeling any symptoms, it's already too late for treatment.

Think everyone has covered the worst of the worst on here, but as a nurse I’ll have to throw in sickle cell anemia. I wouldn’t say it’s the “worst” especially compared to ALS or dementias, but working in a hospital you have your frequent flyer patients with sickle cell. They come in often with pain crisis that’s unmanaged and even we can barely help. It breaks my heart. I also notice a lot of nurses and other healthcare workers don’t really understand their pain and like to diminish their feelings. It’s a hidden disease and you can’t see it and I’ll never know how they feel.

I'm going to strongly say CRPS (complex regional pain syndrome). Many people can find some sort of remission or reduction of symptoms. But for those people who have long term CRPS are generally quite profoundly disabled.

It's a disease that just causes pain, immense pain without a reason. Like the highest pain levels recorded are from this, period. Like levels comparable to amputation without medication.

It develops typically after an injury or surgery but can also happen spontaneously or from something as small as a needle puncture. It often affects a limb. But it can spread to your whole body, jump to other limbs.

It can cause severe swelling and contracture to the point limbs become non functional.

Many people are so sensitive that a touch from the wrong fabric can put people in excruciating pain.

The daily pain these patients live with would put normal people in the hospital. For the most part people have no frame of reference for this type of pain and It never stops, ever, it's inescapable. Sometimes it just gets so bad people will do anything escape the pain including leaving this world.

There is no cure. If you manage to go into complete remission (not very common) it can come back at any time in your life, 10, 20 years later. It can be hard to find successful treatment options and a lot of people can find some relief or be stable at a "livable" but definitely disabled level. Fit example, my wife might need to take a solid dose of hydromorphone (the strong one) just to get to a manageable level of pain at a 7 or 8 out of 10 pain score. That is on top of a neurostimulator and a pain pump that delivers morphine directly into her spine 24/7. She will also getting another stimulator in her spine as it has spread to her other leg.

The worst or those who suffer from this, suffer an unimaginable existence for most people.

Honestly there's even more absolutely stuff with this but it's too long to cover.

Aortic dissection. 2% chance of survival when it rips.

When I woke up my surgeon told me "you just survived one of the worst, most painful things a human body can go through"

Everyone I meet in medicine drops their jaw when they find out I survived it.

Frontotemporal dementia. You become unlike yourself, often inappropriate and aggressive, alienating your loved ones before the dementia worsens to the point of dependency. You can hurt a lot of people before losing your mind and folks are usually on the younger side when it starts.

Fatal Insomnia (whether inherited or sporadic). SUPER rare disease but it makes it physically impossible to fully fall asleep and there's no cure.

ALS is also worse than just about anything else.

Physician here- neurological disorders where movement is affected is pretty bad. psychiatric disorders like bipolar and schizophrenia where mania leads to life destructive behaviors and psychosis is overall awful. other medical conditions that can causes chronic fatigue- cancer/chemo therapy, heart failure, autoimmune disease etc. all come to mind.
but any neurological disorders vs psychiatric disorders i’d say are the worst.

I have ME/CFS that is normally mild (able to work from home and live a somewhat normal life) but was unfortunate enough to drop to profoundly severe for about six months. It was hell. It was like my body and brain had mostly shut down but somehow I was still conscious. I could barely move, speak or think, any light or sound hurt me so I had to wear earplugs and a blindfold 24/7, my loved ones would accidentally hurt me every day trying to take care of me by doing something as small as bumping against the bed or whispering “I’m sorry”. I don’t even have the chronic pain variant of ME/CFS which would add even more to the suffering.

I was extremely lucky to recover from that state, but there are people who have been living in such a state for decades. There is currently no cure and funding for research is extremely low compared to comparable diseases like MS.

About a year ago I had necrotizing fasciitis (flesh eating disease) and it absolutely blows. I got a small cut on my foot from the beach and a few days later I was so sick I passed out and was in a coma that lasted 2 weeks and then I woke up in the hospital without a leg. I do consider myself lucky though since it has like a 40ish% mortality rate.

Endometriosis. Spent 5 years in excruciating pain while my internal organs were being dealt irreparable damage and told first that nothing was wrong and then second that it didn't matter because the only way to fix it meant I couldn't have kids and what about my husband's needs? I went from literally bedridden to living a normal life after my hysterectomy.

So many that suck, but pancreatic cancer has my vote. The symptoms mimic normal aging or bloating for so long that by the time it’s bad and you get your diagnosis it’s almost always too late.

We were told my MIL broke a record for diagnosis to departure. We were told optimistically a year with chemo, but she had her death sentence already. She had literally been up and moving and normal, she was having an increase in falls which is why she went in. She’d been in and out of ERs and doctors offices with her falling spells for a couple of years. Final ER visit and we got a doc who knew to probe deeper. 3 days later we had the oncologist appt and the diagnosis. 19, NINETEEN, days later we watched her take her last breath. 19 days.

My friend got Stephens Johnson Syndrome last year. Pretty rough. All his skin basically turned into an open weeping wound (basically raw meat) for a couple months. He was on a ventilator because he stopped breathing when they tried to fit membranes over his eyes and hold them on with rings to preserve his eyesight. His mucus membranes were the worst. Couldn’t eat, couldn’t poop or pee without feeling like you were pouring food or poop into an open wound.

He had specialists that would change the dressings every few days and they had to take pictures of his body to track the healing. .

Dipg. Cancer of the brain stem that can’t be cured. Usually only happens in children.

Foreign Hand Syndrome. Reading the stories of people’s own hand attacking them and they are powerless to do anything about it…it’s haunting.

Epidermolysis Bullosa (EB), also known as “butterfly skin” is a rare genetic disorder making skin so fragile it blisters and tears from minor friction or trauma, like a butterfly's delicate wings, leading to chronic wounds, pain, and infection, requiring extensive wound care and affecting hands, feet, mouth, and other areas of the body.

Locked in syndrome. It's what happens after you have a massive stroke or cerebral hemorrhage yet survive. You're completely paralyzed, the only thing you can do is blink your eyes. Yet you're completely mentally/cognitively aware of what's going on you, you just can't respond to it at all.

Probably the most terrifying disease to have.