“There are so many conditions out there and it’s impossible to know how to respond to them all, but patience, kindness, compassion, and a belief in your patient is a good place to start.”
‘You may have a medical certificate, but you don’t have a certificate in me.’: Woman with rare disease pleas for doctors’ compassion, trust
‘I can’t do this. I don’t want to live anymore.’ When chronic pain robs you of everything you love, things can get pretty dark.’: Woman shares extensive chronic pain, diagnosis journey
“I later learned this is one of the most painful conditions known to man. People often ask me how I lived with it for so many years.”
‘My whole body hurt every day. I could barely bend down.’: Mom shares journey with Rheumatoid Arthritis, POTS, Lupus
“They couldn’t find Luke’s heartbeat for several minutes. I started to go in and out of consciousness. Before they could even put the partition up, they had begun a crash vertical C-section.”
‘All I could do when I was in his office was cry and beg for a hip replacement.’: Multiple Sclerosis warrior shares journey through misdiagnoses
“Once all my tests came back ‘normal,’ he asked, ‘Does bipolar run in your family?’ I was so defeated and felt I needed to swear off doctors altogether. Sadly, swearing off doctors doesn’t make symptoms go away.”
This Is My Story Of Having Alopecia And Alopecia Not Having Me
“I prayed for strength and posted the first picture. My phone began to go crazy with all of the likes, hearts, messages, congratulations, praises, and thank you’s from both women and men.”
Grieving Girlfriend Raises Over $15k For Brain Cancer Research With DIY Jewelry After Losing Partner To Tumor
“When I was 19 years old, I met my first love Jake. And at 24 years old, I stood by his hospital bed as he tragically passed away from brain cancer.”
‘My mom was told I’d never have a normal life. I was never going to have kids and would be deaf by 16.’: Woman with Osteogenesis Imperfecta defies odds to have miracle baby boy
“I still could barely move. ‘What on earth was she thinking having a baby?’ None of it mattered to me. I was too busy in love with my little miracle.”
‘Life was fun until my mother passed away. Suddenly, at 11, I had to care for my 4 younger siblings.’: Abuse survivor shares foster care experience, POTS diagnosis
“I received my 11th concussion playing volleyball. Previously, I had 10 concussions from child abuse. My comorbidities and symptoms increased to the point I had to take mandatory bed rest.”
‘My son would have grown up knowing I died from a disease I’d passed on to him.’: Woman with rare disease shares heartbreaking decision to abort
“I wanted my baby so badly. I wanted his ten little toes. I wanted to see those blue eyes and the thick black hair he had to have. But then I thought of him watching me waste away as I watched my own father waste away, knowing I had chosen the same fate for him.”
‘I’ve had doctors Google in front of me and advise me while they read Wikipedia. It’s soul destroying.’: Woman shares rare disease diagnosis, advocates for increased awareness
“I take 46 tablets a day and I’m on a continuous infusion of a parathyroid hormone. This is my current reality. I hope it’s not my forever reality, but the truth is no one knows.”