Mindy: One in a Million with Cushing’s Disease
“Please help me,” the letter began. “I’m truly desperate. I have a little boy, and he needs his mama.”
But first, let’s back up a bit. Like many others, Mindy started school at five years old. She loved it and made many friends. However, as an only child, some people claimed she was spoiled rotten.
Later in life, Mindy agreed.
The years passed and almost before her parents could believe it, Mindy started high school. She became an honor student and participated in track and cheerleading, with the blue and white eagles. Mindy loved people, and with her heart focused on others, she had the gift of making them feel 
special. Boys pursued the beautiful girl with the sparkling personality. But Mindy only had eyes for Ryan, her high school sweetheart. Ryan invited her to the prom. She looked stunning in her baby-pink taffeta dress, size four, with the pink and white corsage pinned on her chest. Confident, with an upturned face, she put her hand on Ryan’s arm, bounced on her toes, and glowed. Her eyes sparkled as her mom snapped pictures of the happy couple.
Life was good.
Eighteen years old, with graduation behind her, and a future filled with hope. Mindy attended college, along with Ryan, and hoped to pursue a career as a psychiatrist. She talked often of becoming a doctor to help others. She loved to read and was a member of Goodreads. She looked forward to many things. Getting married to the love of her life, Ryan. Buying a log home in the country, and having five children. Three girls and two boys. Family gatherings with aunts, uncles, and cousins topped her list of favorite things to do.
Her whole life lay ahead of her, or so she thought. Until the day she woke up and everything changed. Something was wrong. She didn’t feel right, then she started gaining weight. That first month she gained 100 pounds. The next month, fifty pounds. She had always tried to eat healthy, and keep up with her exercise, so she couldn’t blame the gain on Hostess Twinkies or hot fudge sundaes. She endured several tests, then sat in the doctor’s office and waited for the results. The doctor, with a distant and empty stare, walked into the room with a folder under his arm. He crushed her world with his words.
“You have a rare disease,’ he said, “something 
that only one in a million people get. You have Cushing’s disease.”
“Are you kidding?” she said. “I’ve never even heard of that. What is it?”
“Cushing’s Disease is an endocrine (hormonal) disorder caused by overproduction of the hormone cortisol. When it functions normally, cortisol helps the body respond to stress and change. It also helps control the amount of water in the body.”
“And when it doesn’t work right?” she asked.
“It changes the body’s response to inflammation and it stimulates the liver to raise blood sugar. A hormone released from the pituitary gland in your brain is not working like it should. Your weight gain is from water retention.”
“But I’m so young.”
“Yes, you’re a little young. Cushing’s Disease most commonly affects adults aged 20 to 50 and is more prevalent in females. It can also be caused by excessive use of cortisol or other steroid hormones. When too much cortisol is produced in the adrenal glands, or an excess amount is taken as a treatment for other diseases, this affects all of the tissues and organs in the body. In this situation, the pituitary gland overproduces its signaling hormone due to a tumor or inflammation. Treatment includes removal of the pituitary tumor, removal of the adrenal glands and hormone therapy.”
Mindy held her palm up to stop him from dumping on more worry. Her voice choked with tears as she let out an uncontrollable whimper. “So is it treatable?”
“Yes,” he said, as he looked down at the floor. “With brain surgery. And follow-up care is important to ensure a tumor will not return.”
“I need brain surgery?”
“I’m sorry,” he said as he put a hand on her shoulder. “But if left untreated, this condition can be fatal.”
She couldn’t grasp the reality of it all. Thoughts of someone cutting into her brain terrified her. Not to mention the fact that she had no insurance and no money. But love and support from family came through for her. Appointments were set up and with God’s help she made it safely through brain surgery.
She hoped things would improve. But she never felt cured and never really recovered as she should have. Her and her mom sought out a second opinion, out of state. The doctor told her that Cushing’s Disease had just slowed down. He wanted to treat her, but unfortunately, her insurance wasn’t accepted. She came back to Michigan to be with her family. She never pursued another doctor, in the hopes that she would heal and be back to her old self. That never happened. Throughout the years she knew deep down that the Cushing’s was still there, hiding in the background, just resting and not making much of a fuss, ready to take over her life again.
Ryan asked her to marry him. Ryan was the one person she honestly wanted to spend the most time with, grow old with, and share her life with. But because of Cushing’s disease, she wanted to wait.
Then, at age twenty, Mindy started to feel it again and went back to the doctor for more tests. She was shocked to discover that she was pregnant. She never thought it was possible, since she had not had a period for over five years. The doctor told her it would be a high-risk pregnancy, but she risked her own life and safely delivered the little boy with baby blue eyes, long lashes, and blonde, naturally curly hair. They named him Landon. The little boy brought joy into the lives of his parents and grandparents.
Mindy loved pets, and she wanted her little boy to have a puppy. She welcomed many strays into her country 
home. If anyone refused to deal with their own pet, they dropped it off at Mindy’s. Her place was known as the one where everyone thought their pet would find a good home. She needed help to care for the animals, she hadn’t been able to lose weight and lived on pain medication which made her dizzy.
But again, she didn’t want to face it, so she put it aside. Inevitably, she couldn’t ignore it when the dreaded symptoms of Cushing’s disease returned and included upper body obesity. Fat collected between her shoulders, her face rounded out and turned red with acne and purple marks on her skin. She had to deal with excess body hair. She became weak, extremely tired, and severely depressed.
She connected on the Internet with a support group of others who had the same rare disease. She made some wonderful friends. They understood what it meant for a disease to take over your body until you were no longer in control.
Her cousin, Stacy, invited her to an all-you-can-eat 
buffet. “Oh, I haven’t been out to eat in so long,” Mindy said, with a faraway longing in her eyes. “I miss it, but I hate the way I look.”
“You’ll be fine,” Stacy said and convinced her it would be good. “Come on, I’ll push you in your wheelchair.” Off they went to Ponderosa. Once inside, their first stop was the restroom. One little girl stared and whispered, “Mama, that lady is fat.”
The words hurt, but she understood that children are honest and the little girl wasn’t
trying to be mean. She finished drying her hands and thought of all the tempting food waiting just outside the door. She hadn’t let herself indulge in such a variety of choices for many years. Stacy pushed her in the wheelchair and together, they headed for the buffet. They tried to ignore the stares of others who didn’t understand until a woman looked her way with a down-turned mouth and shook her head. “Yeah,” she muttered, “like she needs a buffet.”
Mindy’s hearty appetite crumbled. It couldn’t survive the stinging words and the lump in her throat. With wet eyes and cheeks that burned, she glanced up at Stacy and whispered, “Let’s get out of here.” Stacy felt her pain and they left.
After several years of fighting, and being seen by many different doctors, Mindy made one last desperate plea and wrote a letter to a new doctor.
- Hello. I’m writing to you in regards of possibly getting some desperately needed help. This past year Cushing’s has come full force. First, my stepdad found me unresponsive and foaming at the mouth on my bedroom floor, barely alive. The nurse even said that since I was depressed, I probably tried committing suicide and overdosed on pills. That was not the case. Then I had major heart issues. I have to carry nitroglycerin at all times and also have oxygen. During one month I gained another 100 pounds. I retained so much water that my stomach dripped water through its pores. The doctors wanted me to have a weight loss surgery, which I didn’t want to have until the Cushing’s was taken care of, once and for all.
- The doctor said it’s life-threatening now and that it’s very important that I find someone who is an expert in Cushing’s soon. I’ve never been scared to die and I’ve always described the pain that I go through daily as though I’m dying on the inside but waiting to die on the outside. I’m afraid that my body is finally starting to give up and I’m not ready. I have a 4-year-old son who needs me, I just can’t give up.
- I’m currently unable to find an MRI in the state of Michigan that is large enough for me. I’m only 5’3” but I weigh over 415 pounds. My chest is too large to allow me to fit into an MRI both opened and closed. Please help me. I want to see my son grow up and make something of himself. He deserves to have a mom who isn’t sick all the time and continues to get worse. I’m scared to death that he might find me dead, and that is not fair to him. This disease doesn’t just affect me, but it also affects everyone around me. I’ve been sick for about half of my life and I’m ready to be able to live again and finally be able to heal and move on. It’s to the point that I’m pretty much bedridden. So please help me. I’m truly desperate.
- Her letter received an answer. “We will do our best to help you, but it may take a few weeks to get you scheduled. It is also extremely important that we know your current laboratory results. Would you contact your doctors and ask them to send me your laboratory data, and possibly a letter of referral? Also, you would give me permission to contact your doctor? Then we can move forward. We will do our best to help you.
While waiting to see the new doctor Mindy continued to gain weight and reached 450 pounds. She could barely walk so she spent most of her time at home. She couldn’t even bathe herself. Unless we’ve ever been forced to endure the humiliation of having someone else take over our most private duties, we couldn’t understand.
Her last desperate plea for help came too late. At twenty-five, just seven years 
after her diagnosis, Mindy passed away at her home. Yes, Mindy was one in a million who suffered when the horrible disease took over her body. Mindy fought hard and long, with a disease that she couldn’t control. But, unfortunately, it was a fight that she could not win. Mindy was a beautiful soul. Cushing’s Disease stole her life.