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11 Things To Remember If You Love A Person With Albinism

11 Things To Remember If You Love A Person With Albinism

Mashawna Thompson’s daughter, Lyra, came into the world with usually pale skin and a full head of nearly-transparent hair.  By all measures, she was beautiful.  But then Mashawna experienced that moment that all new parents feared–the doctors suspected that something was “wrong.” Ultimately, baby Lyra was diagnosed with albinism.

Many people are unfamiliar with the term “albinism,” but nearly everyone has heard of “albinos.” And that is only the tip of the iceberg of misunderstandings.

While Lyra, who is now a thriving 9-year-old, has some physical challenges due to her condition — she has poor eyesight, light sensitivity, and sensitive skin — the greatest obstacle that this family has faced has been the plethora of misunderstandings that people have about albinism.

According to Mashawna, who blogs at Parent of a Child With Albinism, “It really bothers me when people just stare, which happens A LOT. Fortunately, most of the time Lyra can’t see well enough to see them staring at her, so it doesn’t bother her as much. I would much rather people ASK about it than just stare.”

She even had a t-shirt made for Lyra that says “I was born with it” on the front and “Yes, it’s real” on the back. “By far, the most common question we hear is ‘Is that her real hair color?’ ” explains Mashawna.

In addition to stares and questions about Lyra’s hair color, Mashawna has observed the negative stereotypes in the media and the dehumanizing connotations associated with the term “albino.” Mashawna says that, “On a few occasions, other kids have called Lyra a vampire or said ‘Are you a vampire?'”

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Recently, Judy Silny wrote an article about the unique challenges faced by people who have ADD.  She emphasized that understanding a person’s challenges can help you to be more patient, compassionate, and tolerant.

Unfortunately, Mashawna’s family’s experiences are common, and albinism is at least as misunderstood as ADD, and loving a person with this condition does require you to understand the challenges that they face due to their albinism. Here are some things to remember if you love a person with albinism:

1.  They wish that you would be careful about using the term “albino.”

According to an informational bulletin published by the National Organization for Albinism and Hypopigmentation  (NOAH), the use of the term “albino” is offensive to some people with albanism.  Referring to these people as “albino” increases separation and stigmatization.

When you refer to them as “people with albinism,” that empahsizes the fact that they are people first and that their condition does not define them.  According to Mashawna, “I don’t like hearing ‘Is she albino?’ But it doesn’t bother me as much as it used to. I understand that this is the term that most people are familiar with, but the word has so often been used in an inaccurate and/or insulting way by society and in media, that we prefer not to use it.”

But you also should not automatically dismiss this term.  According to an article on Vis-Ability Stories, many people with albinism are embracing the word “albino” as a source of pride and identity. So follow your loved one’s cues, and refer to their condition in the way that they are most comfortable.

2.  They want you to know that albinism is not necessarily a disability.

According to NOAH, albinism is not considered a disability under the Americans with Disabilities Act, because it does not always cause significant limitations in the activities of people who have it.  While some people with albinism do have disabilities, such as visual impairment, albinism itself is not considered to be a disability.

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3.  They do, however, have many experiences similar to those who have disabilities.

NOAH states that people with albinism are a unique group and often do feel isolated from people who do not have albinism. Albinism is a part of their identity, and they are often met with prejudice and misunderstanding about their condition. People with albinism have many of the same social challenges as people with disabilities.

4.  They want you to know that people of all races can have albinism.

Albinism does not only affect families with light skin, according to NOAH.  This condition can be especially challenging for African-Americans and people who belong to darker-skinned races. Albinism can cause these people to experience difficulty with their racial identities and lead to struggles to “fit in” with other people of their culture.

5.  They also want you to realize that albinism is not an illness.

According to Every Child Ministries (ECM), albinism is not a sickness or a disease. It is a genetic condition inherited from both parents, even if the parents do not have albinism. Take care to treat a loved one with albinism as if they are healthy–because they are!

6.  They can lead “normal” lives.

ECM states that people with albinism can expect to have a normal lifespan and lead lives without any limitations due to their condition. They do not have any type of mental impairment, and they can expect to achieve the same goals as their peers who do not have albinism.

7.  They often have eyes that are sensitive to light.

Wearing sunglasses is a must. People with albinism have light-sensitive eyes that can feel a painful, burning sensation in the sun, according to ECM. They need to take extra precautions in order to protect their eyes. Mashawna states, “Sunglasses AND a hat are a must! Also sometimes even indoor lights can be a problem especially florescent lighting. They put shades over the light fixtures in Lyra’s school classrooms.  Also, overall visual acuity is impacted by the amount of light.”

8.  They also have sensitive skin.

According to ECM, people with albinism have skin that burns easily in the sun, and they often get sores on their skin and lips, due to its sensitivity. There is also an increased risk of skin cancer in people with albinism.  Staying out of the sun during the hottest times of the day, and wearing sunblock and protective clothing can help minimize skin issues.

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According to Mashawna, “…one advantage specific to albinism that I can think of would be that it forced everyone in our family to pay better attention to and stress the importance of sun protection.”

9.  They want you to know that there are different types of albinism.

According to Kids’ Health, different people are affected differently by albinism. Some people have pale skin and hair, while others only have eyes that are affected. The eyes of a person with albinism may be red or pink, or they may be brown or blue.  Some people with albinism have visual impairment, while others do not. It is important to realize that if you know one person with albinism, you know one person with albinism.

10.  They may have visual impairments.

The visual impairments that people experience with albinism can vary. Kids Health states that many people with albinism are near-sighted, far-sighted or have other visual impairments.

Some visual problems can be corrected with glasses or contacts, some require surgery, and some can not be corrected at all.

It is important to realize that a lot of people with albinism try to hide their visual impairments, because they want to fit in with everyone else.

This has been the greatest challenge that Lyra has faced.  She has poor depth perception and difficulty reading social cues, due to her limited vision.

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According to Mashawna, “Lyra is pretty smart and quick to memorize her environment so she can be a pretty good ‘faker’ especially in familiar places…But then those moments when she DOES struggle visually, tripping on a step, getting too close to a person when talking or holding a book an inch away from her face, if to people who don’t know she has low vision, she just looks weird.”

11.  They want you to know that some types of albinism are associated with more severe health issues.

According to the American Association for Pediatric Ophthalmology and Strabismus, two rare forms of albinism are associated with other health issues.  People with Hermansky-Pudlak Syndrome (HPS) often have more bleeding and bruising, as well as bowel and lung disease in some cases. Chédiak-Higashi syndrome causes increased risk of infections, anemia, and enlarged liver.

Learning about your loved one’s albinism can help both of you to face this challenge together.  Mashawna states that, ” ​I think one advantage of having a child with albinism would be the way it changes you.  It has forced us to have more patience overall. It has given us more awareness and tolerance for people with differences or disabilities.  It’s taught us to be more compassionate.”

As you grow in your understanding of your loved one with albinism, you may be surprised by the ignorance and misconceptions that people have about this condition.  Perhaps the best way to support your loved one is to spread the word and correct the misinformation that you hear. Spreading understanding is spreading love!

To help spread understanding, you may want to start by sharing this video that Mashawna created.

Perception is Not Reality

Featured photo credit: Mashawna Thompson, http://parentofachildwithalbinism.com via parentofachildwithalbinism.com

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Last Updated on July 15, 2019

41 Beautiful Pictures That Show What True Love Is All About

41 Beautiful Pictures That Show What True Love Is All About

Some things in life are hard to describe, yet we can recognize them when we see them.

Love is one of those things.

True love comes in many different forms, but here are some that many of us know well.

True love means supporting those who can’t support themselves

supportive couple

    A young man comforts his date in Times Square, New York City. Image by mbtrama

    strong hug

      A young man holds his significant other close to him. Image by Brad Fults

      running help

        A young track competitor helps one of her injured opponents over the finish line. Image from ViralNova.com

        feeding kitten

          A soldier in the Korean War takes time to feed a baby kitten. Image from US Naval Insititute

          It’s having the perfect selfie partner

          mom and daughter selfie

            A mother and her daughter take a selfie together. Image by Andrew Fysh

            girlfriends

              Two young girls pose for the camera. Image by Rolands Lakis

              selfies

                A happy couple takes a picture together. Image by Kayla Heineman

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                selfie

                  Two best friends take a selfie together. Image by Jason Wahido

                  dude selfie

                    Friends take a selfie together. Image by Glenn Scofield Williams

                    It’s all the warm fuzzies

                    12748262703_84c008f4e5_z

                      A young man spends time with his dog on a beach. Image by Magdalena Roeseler

                      DSC06952

                        A pet owner hugs his dog while on a day trip in San Francisco. Image by Taro the Shiba Inu

                        It means having a friend to photobomb you

                        photobomb

                          A boy makes a funny face as he poses for a picture with his brother. Image by Michael Bentley

                          old man photobomb

                            A man photobombs his wife while their grandson snaps a picture. Image by Frank

                            family photobomb

                              Family members photobomb their relatives’ Thanksgiving day family photo. Image by Beth Scupham

                              boyfriend photobomb

                                A friend photobombs the photographer and their friend, the woman in the foreground of this photo. Image by Lachlan Hardy

                                True love means being there even when life gets unbearably hard

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                                shoulder to cry on

                                  A family watches the Vermont National Guard depart for Afghanistan. Image by The U.S. Army

                                  flood dog

                                    During a monsoon in the Philippines, a boy carries his dog to safety. Image by Romeo Ranoco

                                    A woman is rescued from flood waters by a resident standing on top of her car during heavy rain in Chalandri suburb north of Athens

                                      A man helps a woman out of her vehicle during a flood in Chalandri, Greece. Image by John Kolesidis

                                      lunch

                                        A woman has lunch with her husband every day, even after he’s passed away. Image from ViralNova.com

                                        hug

                                          A woman hugs the mother of 6-year-old Noah Ponzer, who was one of the victims of the Sandy Hook shootings. Image by Spencer Platt

                                          rubble

                                            An Oklahoma couple pauses while trying to salvage belongings from a family member’s home after a tornado. Image by Adrees Latif

                                            sister and brother

                                              A girl puts her arm around her little brother as they wait outside of Sandy Hook Elementary after gunshots are fired. Image by Reuters.

                                              headstone

                                                A woman sits at her husband’s grave the day before their wedding anniversary. Image from NBC news

                                                It means taking the time for long goodbyes

                                                110321-N-BT887-100

                                                  A man says goodbye to his son before deploying. Image by Official U.S. Navy Page

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                                                  national guard goodbye

                                                    A South Carolina man says goodbye to his son before deploying for Afghanistan. Image by The National Guard

                                                    saying goodbye

                                                      A Sergeant hugs both of his sons before being deployed to Afghanistan. Image by The National Guard

                                                      And cherishing reunions

                                                      husband home

                                                        A woman hugs her husband as she sees him for the first time since his deployment to Iraq. Image by The U.S. Army

                                                        boyfriend home

                                                          A young  woman hugs her significant other as he returns home for Kuwait. Image by The National Guard

                                                          mother hug

                                                            A mother drops to her knees as she hugs her son on her return home from the Persian Gulf. Image by The National Guard

                                                            True love is letting yourself feel young when they’re around

                                                            elderly women

                                                              Two friends on their smartphones. Image by Robert Neff

                                                              feeling young

                                                                A young couple getting their picture taken. Image by db Photograph

                                                                sprinkler dad

                                                                  A father plays in a sprinkler with his daughter at Millennium Park in Chicago. Image by Ben Forsberg

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                                                                  subway couple

                                                                    A young couple on a subway enjoys sharing time together, while the girlfriend’s father sneaks a photo of them. Image by Gareth Williams

                                                                    wheelchairs

                                                                      A couple holds hands on a fall day. Image by David Amsler

                                                                      It’s letting yourself be silly… just because they’ll enjoy it

                                                                      silly faces

                                                                        A grandfather makes faces at the camera with his granddaughters. Image by Tim Pierce

                                                                        vote for pedro

                                                                          A woman’s father wears a Napoleon Dynamite t-shirt to make his daughter laugh. Image by emdot

                                                                          True love is allowing yourself to show how you really feel

                                                                          date night

                                                                            A young couple kisses in the back of a restaurant in Washington, D.C. Image by Derek Key

                                                                            playing violin

                                                                              Violinist Nancy Dinovo plays at a memorial service for the victims of 9/11. Image by Christopher Morris

                                                                              True love is timeless

                                                                              old friends

                                                                                Friends spending some time together. Image by Cristian Bortes

                                                                                sitting around a fire

                                                                                  A group of friends sits around a campfire eating. Image by New Old Stock

                                                                                  elderly couple

                                                                                    An elderly couple walks down a street together. Image by Matteo Paciotti

                                                                                    Featured photo credit: Matteo Paciotti via flickr.com

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