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Melissa B, Undiagnosed Daughters

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undiagnosed4

 

Hi everyone, I never imagined that I would wake up this morning to a life changing realization. I have spent years asking doctors what is happening to my child with no amswers. She was just 5 years old when she began to display cushings symptoms. At the time we repeatedly raised concerns with our pediatrician about her dramatic weight gain specifically in her belly area which made her appear pregnant and a once advanced child was regressing academically but the doctor’s constantly told me not to worry because all children develop differently they said. By the time she was 9 years old she began to display the following symptoms:

1. More weight gain focused in the belly area, face, and back (buffalo hump) with the belly area being firm and her face having a slightly swollen appearance.
2. Dark Black skin around her neck and areas such as in between legs and tummy area
3. Complete loss of hair on her head
4. Complete loss of eyelashes
5. Continued Slow learning in school
6. Depression and Anxiety
7. Lots of hair on arms, legs, and pubic area
8. Acne
9. Stretchmarks

She has been teased brutally in school and after having her go through many tests with no answers I ran across the possibility of her having cushings. Since we have seen two endocrinologists and both have run saliva and urine tests and have said she doesn’t have cushings, thyroid issues, diabetes and so on and so on.

Now my 8 year old is having the same symptoms as her sister. Today i noticed that she is now losing her hair too and I’m absolutely devastated. We need answers and I don’t know where else to turn.

If anyone out there is reading this and can help me get answers please I’m begging you to please reach out to me.

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Annie, Child With Pituitary Cushing’s

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We’re sharing the story of Annie, who was treated at Eunice Kennedy Shriver National Institute of Child Health and Human Development for Cushing Syndrome.

Thanks to the incredible doctors at NICHD & The NIH Clinical Center, she underwent an extremely successful clinical trial and surgery and is now thriving like a child should.

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Elizabeth C (Moonface1561), Pituitary Bio

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The pituitary gland

The pituitary gland

High schoolvl senior, I was finally diagnosed with Cushing’s Disease. Extreme leg pain, rapid heart rate and overall sick feeling drove this 17 year old nuts. Huge moonface, buffalo hump and torn skin on torso, stomach, thighs and arms did not help.

By the Grace of God, a brilliant pediatric endocrinologist found me and sent me to UCSF for transphenodal surgery. There, other genius pediatric physicians gawked at my monster appearance. The famous Dr. Charles Wilson went into action.

Six years later, my tumor grew back with a vengeance. My cortisol levels reached 3000 as a ferocious candida infection spread all over my body.

My second operation was followed with radiation treatments. I lost my baby shortly thereafter. Years later, childless and fatigued, I was informed that the radiation therapy caused the remainder of my pituitary gland to disintegrate.

I now have secondary Addison’s disease and nearly died one month ago from an acute adrenal crisis. I am lucky to be alive…..swollen and all.

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Survivor’s parents organize charity bike ride for Children’s Hospital neurosurgery

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La Cañada resident Taylor Winter was just 12 when she was diagnosed with Cushing’s disease, a condition caused by a tumor on the pituitary gland that affects everything from organ function and sleep to hormone levels and body growth.

Although she’d likely lived with the ailment for years, once it was discovered by an endocrinologist, Taylor’s family had to act fast to remove the tumor. That’s when they were referred to Children’s Hospital of Los Angeles’ neurosurgery division, according to mom Gaia Winter.

“We met with neurosurgeons to see what her options were, and eight days later she was in surgery,” Winter said, recalling the two surgeries it took to remove Taylor’s tumor.

Today, Taylor is an 18-year-old freshman studying theater arts at North Carolina’s High Point University. Her life may not be perfect (she still endures complications from her condition and surgeries) but she knows it’s better than it would have been had the tumor gone unchecked.

“I was not in a happy place before I got treatment, and I think it would still be that way today if I had gone undiagnosed,” she said in an email interview.

This Saturday at 11:30 a.m., Gaia and husband Wade Winter are hosting a charity bike ride at the indoor cycling studio SoulCycle in Pasadena to raise money for Children’s Hospital’s Neurosurgery Ambassadors group. The group comprises former brain surgery patients and their families who wish to “pay it forward” by raising funds for the neurosurgery division.

For a $75 donation, participants can reserve a bike and take a 45-minute stationary bike group ride, although cycling is not mandatory, Gaia Winter said. The money raised will help sponsor neurosurgery fellow Dr. Judith Wong, who will take her training to a town where skilled neurosurgeons are few.

Michael Sampiano, director of the hospital’s Ambassador groups, worked with the Winters and another family to create the program in 2012. So far, the neurosurgery division has received $14,000 from the efforts of that group. Both Taylor and twin sister Alissa are junior ambassadors in the program.

“The money this group raises covers the training and living expenses of our pediatric neurosurgery fellow (and) it gives our neurosurgery division the financial backing to continue its work,” Sampiano said, encouraging locals to join in Saturday’s ride. “It is indeed an investment in the community and for kids in the future who might be in need of this life-saving work.”

Taylor says she was lucky to have such a skilled facility so close to home and recalls her time spent at Children’s Hospital positively.

“Even though I was in pain or discomfort for the majority of my stays, the hospital staff and various volunteer groups… helped create such a fun and caring environment that I didn’t want to leave,” Taylor said.

The Winters, along with other patient families, hope to raise $100,000 this year for the neurosurgery division through the Ambassadors group. It’s the least they can do to give back, after being given so much, Gaia Winter says.

“They gave her the ability to be a normal kid,” she said. “We just feel passionate about giving back to them. The amount of work they do and the lives they touch is tremendous.”

 

What: Charity Ride for the Division of Neurosurgery

Where: SoulCycle, 140 S. Lake Ave., Pasadena.

When: Saturday, from 11:30 a.m. to 12: 30 p.m.

Admission: A bike reservation cost $75 but all donations will be accepted.

More info: Visit http://support.chla.org/pages/thewinterfamily or email NeuroAmb@gmail.com