4 Famous People With Neurofibromatosis (Alexander Owens)

Neurofibromatosis is a set of complex genetic disorders which affects almost every organ system, causing tumors to grow on nerves throughout the body and in the brain.

It also affects the development of the cardiovascular system, skin, bones, respiratory system, eyes, hormonal system, and gastrointestinal tract.

An estimated 100,000 people in the United States have an NF disorder, that occurs in all races and ethnic groups and in both sexes.

Types

Neurofibromatosis Type 1

NF1, also referred to as von Recklinghausen’s disease, causes deformed bones and skin changes. It affects 3 in 3,000-4,000 people in the United States. Approximately 50 percent of people with the disease do not have any family history of the condition.

Expression of the disease is highly variable, both within and between families. It is caused by changes in a gene called NF1 (a tumor-suppressor gene), that is found on chromosome 17. Neurofibromatosis Type 1 follows an autosomal dominant inheritance pattern, in which a mutation happens in only 1 copy of the gene.

Signs and symptoms of NF1 include:

  • abnormal development of the temple bone of the skull, the spine, or the tibia;
  • a tumor on the optic nerve;
  • 2 or more growths on the iris of the eye;
  • freckling in the area of the armpit or the groin;
  • 2 or more neurofibromas, or one plexiform neurofibroma;
  • 6 or more light brown spots on the skin, measuring more than 15 mm across in adolescents and adults or more than 5 mm in diameter in children.

Note – symptoms commonly begin during childhood, and a definite diagnosis can usually be made by 4 years of age or younger.

Neurofibromatosis Type 2

It causes ringing in the ears, hearing loss, and poor balance. All ethnic groups and races are equally affected by this disease. NF2 occurs in about 1 in 25,000 individuals and results from mutation of the NF2 gene and is transmitted on chromosome 22.

Common signs and symptoms of NF2 may include:

  • seizures;
  • ringing in the ears;
  • numbness or weakness in the legs and arms;
  • vision impairment;
  • hearing loss;
  • glaucoma;
  • problems with balance.

Note – usually, the symptoms associated with NF2 start to develop in the late teens or early twenties.

Schwannomatosis

It is the rarest type and does not cause malignant tumors or neurological disabilities. Common features include the development of schwannomas on the spinal, cranial, and peripheral nerves, that commonly result in problems with neurological dysfunction and chronic pain.

According to statistics, 15 to 25% of cases of schwannomatosis run in families. Mutations in at least two genes, LZTR1 and SMARCB1, can cause schwannomatosis. The disease is usually diagnosed in adulthood.

Here Is A List Of 4 Famous People With Neurofibromatosis:

#1 Munya “Mony” Yassir

She is an actress who is best known for Degrassi: The Next Generation (2001). In 2000, Munya was the Ambassador for the Easter Seal Society, Ontario. Her main hobbies off the set include music and drawing.

Mony Yassir has neurofibromatosis and is confined to a wheelchair due to the disease.

#2 Robert Redford

Image credit – https://ro.wikipedia.org/wiki/Fi%C8%99ier:Robert_Redford_(cropped).jpg

He is a Hollywood legend who is best known for his roles in acclaimed films such as – ”The Way We Were” and ”The Sting.” In the early 1960s, Robert also appeared on many TV series, including Maverick, The Twilight Zone, and Alfred Hitchcock Presents.

However, the turning point in Robert Redford’s career came up in 1969, when he co-starred with Paul Newman in the popular western Butch Cassidy and the Sundance Kid. In this movie, he portrayed the outlaw Sundance Kid.

He won an Academy Award for the ”Best Director” for the film – ”Normal People.” In 2008, Robert received the Dorothy and Lillian Gish Prize for his role in the arts.

In 2013, Robert Redford earned raves for his performance in the one-man film All Is Lost by director J.C. Chandor. In the year 2014, he starred in the Marvel Comics outing Captain America: The Winter Soldier.

In April 2014, Time magazine included him in their yearly Time 100 as one of the “Most Influential People in the World.”

On November 22, 2016, in a live televised ceremony held in the East Room of the White House, Redford was awarded the nation’s highest civilian award – the Presidential Medal of Freedom – by President Barack Obama.

According to some sources, Robert Redford has a mild case of neurofibromatosis. Also, his brother suffers from NF.

#3 Nick Gilbert

Nick Gilbert, the son of Dan Gilbert – the owner of the Cleveland Cavaliers, has neurofibromatosis.

Dan Gilbert also owns several sports franchises, including:

  • the NBA G League’s Canton Charge;
  • the American Hockey League’s Cleveland Monsters;
  • the Arena Football League’s Cleveland Gladiators.

About 10 years ago he has been through a life-saving brain surgery. In addition, Nick Gilbert has been treated by chemotherapy on and off for 15 years.

In 2018, Nick Gilbert was scheduled to undergo major brain surgery at a Detroit-area hospital. During the procedure, which involves a laser ablation brain surgery (a medical procedure for brain tumors which is less invasive than traditional brain tumor surgery involving craniotomy), the surgeons have removed the tumor that was located in the brain stem.

On Feb. 15, 2018, Nick underwent an 8-hour operation. After 38 days in recovery, he was released from the hospital.

#4 Alexander Owens

Alexander Owens is a 5-year old boy that is afflicted with NF1.

“Day to day, Alex doesn’t face too many physical struggles. He is able to enjoy and play games and sports as much as the average kid, more or less. Although he can suffer from pediatric migraines and occasionally has back pain,” Diane Owens (his mother) said.

Moreover, Diane Owens says that Alexander is lucky because at this point he does not suffer from substantial physical setbacks which can plague children with NF1, including physical deformity, severe pain, or learning disabilities.

For three years, Diane Owens is running in marathons to raise money for her son. However, at the beginning of 2016, she was diagnosed with Guillain-Barre syndrome, an autoimmune disorder which causes loss of reflexes, muscle weakness, and tingling in the legs, face, arms, and other parts of the body.

An estimated 1 or 2 out of every 100,000 people develop Guillain-Barré syndrome each year in the US, according to the Centers for Disease Control and Prevention.

In the present day, Diane is back on the path of raising money for research to help her son and the Children’s Tumor Foundation.

References

https://jmg.bmj.com/content/36/3/197
https://www.ncbi.nlm.nih.gov/pubmed/17912073
http://cancer.iu.edu/breakthroughs/breakthroughs/story3.shtml