A 12-Year-Old Blogs His Experience with Idiopathic Intracranial Hypertension

A few years ago, Kyan Harris started experiencing some unwelcome health issues. At just nine years old, the boy wanted to play rugby with his friends. But instead, he was sidelined by severe headaches, nausea, and dizziness. Soon, Kyan lost his sight and received a diagnosis of idiopathic intracranial hypertension. Then, at age 11, Kyan was diagnosed with a rare form of cancer.

But instead of feeling down about his situation, Kyan is approaching it with positivity and care. In fact, he inspires to advocate for other patients and raise awareness for rare conditions using his blog, “It Is What It Is.” 

Idiopathic Intracranial Hypertension

So let’s break down the name of this condition. “Idiopathic” means either that a condition has an unknown cause or occurs spontaneously and without warning. Intracranial hypertension (IH) refers to a condition in which pressure builds up in the skull. So, idiopathic intracranial hypertension signifies a pressure increase within the skull for an unknown reason.

However, some doctors think that intracranial hypertension is caused by a build-up of cerebrospinal fluid, a fluid that protects your brain and spinal cord from damage, and provides nutrients for your nervous system.

Women between the ages of 20 and 35 are more heavily impacted by intracranial hypertension. Additionally, doctors believe obesity to be a potential risk factor. People with intracranial hypertension may experience symptoms similar to those with brain tumors. However, intracranial hypertension does not result in brain tumors.

Symptoms include tinnitus, seconds-long episodes of blindness, double vision, nausea and vomiting, dizziness, a severe headache that gets worse with eye movement, blurred vision, and neck, shoulder, and back pain. Read more about intracranial hypertension.

Kyan’s Story

Now, at 12 years old, Kyan is still undergoing chemotherapy treatment for his cancer. Currently, his family helps him run his blog so that he can share his experience with others.

According to Kyan, he hopes that:

“I can look back at the memories [on my blog] and see what I’ve been through and feel good.”

Through his blog, Kyan and his family have connected with others going through the same experience. Additionally, many people offered to donate money to his cause.

But rather than accepting any donations, Kyan asked for something else. He asked that any money be instead donated to one of three charities:

  • Noah’s Ark: which helps to support a specialized children’s hospital,
  • Latchwhich raises money to support children and families being treated for cancer at the Children’s Hospital for Wales, or
  • Dreams & Wisheswhich grants dreams to children impacted by life-threatening illnesses.

Read the original article here.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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