I have hydrocephalus

SYS - Ft image Mary Sullivan

Diagnosed at 23

Mary

Story Written by Author/Self

By Ines Schlegel June 17, 2019

I joined the Peace Corps and taught high school Math in Morocco and Kenya. My school in Kenya was at about 10,000 feet. I don’t know if the elevation attributed to the increase in symptoms or not, but within 6 months I experienced a variety of new symptoms.

Read More...

Diagnosed at 23

Tracy

Story Written by Author/Self

By Ines Schlegel September 27, 2018

We are not sure if I was born with hydrocephalus or when it actually developed, but my condition didn’t rear it’s ugly head until one morning when I was 23 years old that I woke up and drove to work.

Read More...

Rafael

Story Written by Author/Self

By Ines Schlegel August 23, 2018

Rafael is a PhD student in Learning, Design, and Technology. He is currently developing a narrative video game to discuss “hidden disabilities”, focusing on his own experience with hydrocephalus!

Read More...

Diagnosed at Birth

Abby

Story Written by Author/Self

By Ines Schlegel May 17, 2018

In sharing my story, I hope to empower and inspire you to smile through your trials, whether they be with hydrocephalus or any other challenges that you may face.

Read More...

Diagnosed at 59

Deborah

Story Written by Author/Self

By Ines Schlegel May 1, 2018

Knowledge is power and I believe it’s better to be educated than to go into something blindly. Particularly, brain surgery!

Read More...

Diagnosed at 23

Gabrielle

Story Written by Author/Self

By Ines Schlegel March 22, 2018

My hydrocephalus has played a role in shaping me into the person I am today and has changed my outlook on life. “Always play the best game with the cards you’ve been handed.”

Read More...

Diagnosed at Birth

Alexsis

Story Written by Author/Self

By Ines Schlegel February 6, 2018

I was born 3 months early at just 28 weeks and I have had more brain surgery’s than birthday’s!

Read More...

Diagnosed at 3 Months

Christopher

Story Written by Author/Self

By Ines Schlegel December 15, 2017

Having a shunt has made my life anything but boring, and adjusting to what I call, “life in low resolution,” was not easy, it has changed my life’s path, but it hasn’t ruined it.

Read More...

Blair

Story Written by Author/Self

By Ines Schlegel December 11, 2017

The author of Adolescence Interrupted, a coming-of-age memoir that serves as a motivational road map for anyone forced to confront the overwhelming reality of a daily existence without stability or safety nets.

Read More...

Diagnosed at 19

Philip

Story Written by Author/Self

By Ines Schlegel December 5, 2017

I was born with an eye condition called Congenital Toxoplasmosis. During the 1970’s doctors did not know much about the Toxoplasmosis condition. However they now know this condition does more damage to the body than just the eyes

Read More...

Diagnosed at 9 Months

Heather

Story Written by Author/Self

By Ines Schlegel October 24, 2017

An MRI in January 2016 revealed a break in the catheter and I prepared myself for surgery number 5 in one year!

Read More...

Diagnosed at 6 Months

Amanda

Story Written by Author/Self

By Ines Schlegel May 15, 2017

I am so blessed to have such a diagnosis. It makes me appreciate the good days, and makes me realize how valuable and precious health truly is.

Read More...

Diagnosed at 1

Davison

Story Written by Author/Self

By Ines Schlegel May 2, 2017

From that last surgery at the age of eight, I have been in great health.

Read More...

Diagnosed at 39

Christine

Story Written by Author/Self

By Ines Schlegel April 18, 2017

I view the challenges I have faced as an avenue for opportunity.

Read More...
Adult with hydrocephalus

Diagnosed at 12

Sandy

Story Written by Author/Self

By Amanda Garzon October 19, 2016

Congenital hydrocephalus
Receptionist/Secretary

Sandy was diagnosed with hydrocephalus when she was 12, but not treated until she was 18. She is in the group of first generation hydrocephalus survivors!

Read More...
Teen with hydrocephalus

Diagnosed at Birth

Edgar

Story Written by Author/Self

By Amanda Garzon February 15, 2016

Edgar was diagnosed with communicating hydrocephalus as a child.

Read More...
Young adult living with hydrocephalus

Diagnosed at Birth

Brianna

Story Written by Author/Self

By Amanda Garzon February 15, 2016

Brianna was born with hydrocephalus and Dandy Walker Syndrome. With aspirations to become a doctor, Brianna refuses to let hydrocephalus run her life.

Read More...
Robert, congenital hydrocephalus

Diagnosed at Birth

Robert

Story Written by Author/Self

By Amanda Garzon October 26, 2015

Robert was diagnosed with hydrocephalus at two weeks of age.

Read More...
Young adult living with hydrocephalus

Diagnosed at age 18

Melinda

Story Written by Author/Self

By Amanda Garzon September 23, 2015

Melinda was diagnosed with congenital hydrocephalus at the age of 18. In the summer of 2013, her symptoms escalated to having migraines every day, urinary incontinence, vomiting, and severe neck pain.

Read More...
Young adult living with hydrocephalus

Diagnosed at Birth

Jessie

Story Written by Author/Self

By Amanda Garzon September 23, 2015

Jessie acquired hydrocephalus from a brain bleed and she has decided to share her story in the hopes that by talking, we can end the negative stigma around differently-abled people.

Read More...