Tag: Albinism

International Albinism Awareness Day

July 23, 2015July 23, 2015 · Leave a comment ·

I wrote this article and it originally ran in the Concord Monitor Friday June 13, 2015. It is reprinted here with permission.

My daughter is reviewing brochures for educational travel programs. “Sooooo I’m guessing Tanzania is out.” I look up at her and give her the “look”. She’s sitting across the room from me so I know she doesn’t see my face. Not because she’s not looking, but because like me, she has a hard time seeing details like facial expressions at distance. “Sure honey, you can go to Tanzania if you have a death wish or can spare a few body parts.” I wish I were joking.

Like their father and me, my children have albinism. Since the records started being kept in 2000, more than 147 people with albinism have been murdered primarily in countries in eastern Africa; and there have been another 229 acts of violence including mutilations, grave desecrations and kidnappings. These figures are as of June 3, 2015 and are compiled by Under the Same Sun, a Canadian charity focused on ending the atrocities and bringing basic human rights to all people with albinism. In Tanzania and other East African countries, people with albinism are hunted and their limbs hacked off and sold to witch doctors for inclusion in potions that are said to have magical powers and will promote prosperity and wellness. So no, my daughter will not be going to Tanzania, or anywhere in East Africa for that matter.

Albinism is a genetic condition. It causes a lack of pigment in the skin, hair and eyes. Most people are more familiar with the term albino but some in the albinism community find that label offensive. Albinism affects all races. In the Western world, albinism typically affects 1 in 20,000 people. In Africa that number is anywhere from 1 in 2,000 to 1 in 400. People with albinism are born with decreased pigment in their skin, hair and eyes (oculocutaneous albinism OCA) or just the eyes (ocular albinism OA). People with albinism, or PWA’s as we commonly refer to ourselves, have light colored hair and are fair skinned, and we also have varying levels of decreased visual acuity. A large majority of PWA’s are considered legally blind, which means that their best corrected vision is 20/200. That doesn’t mean we’re totally blind, but small print and things at a distance are hard to see. We have nystagmus which is an uncontrolled motion of the eyes. Even though our eyes shake, we don’t see the world as always in motion, but it does mean our brains have to work harder to provide a stable image. PWA’s are sensitive to the sun and bright light (photophobia), so it’s not unusual to find me wearing sunglasses even on an overcast day. We also burn easily. In the U.S. we are fortunate to have easy access to sunglasses, sunblock and sun protective clothing. Also, people with albinism likely have jobs that are indoors.

A Tanzanian woman who lost her right arm to attackers that wanted to sell it to witch doctors. — Image courtesy of Under the Same Sun

In Africa, things like sunglasses, hats and sunscreen are virtually impossible to come by. According to Asante Mariamu, a U.S.-based non-profit committed to providing education and support PWAs in East Africa, most people with albinism die from skin cancer before the age of 30. Less than 2% of PWAs in Africa make it to their 40^th birthday.

A lack of understanding of the genetics of albinism and prevalence of myths means PWAs in Africa are shunned and often live in fear for their lives. For example, it is believed that having unprotected sex with a woman with albinism will cure AIDS (it won’t). Another common belief is that touching a person with albinism can bring illness, bad luck or even death, because albinism is a curse brought by the gods or the dead.

A Tanzanian Toddler already showing signs of severe skin damage from the sun — Image Courtesy of Asante Mariamu

People with albinism face discrimination and bullying in the U.S., but on a completely different level. There are social stigmas and challenges to becoming gainfully employed. When I was in school, I was teased and called Casper the Ghost or White Cap. There was the high school physics teacher who used to like to yank open the shades so that the sun would shine right in my eyes. Then there was the prospective employer who upon discovering I might need accommodations (a larger computer monitor), altered the job description so I was ineligible. When I was alone, I felt very alone in my struggles.

I finally met another person with albinism when I was in the 8^th grade and researching albinism for a health report. Jan Knuth was a social worker in Philadelphia. When I watched Jan, I was able to step outside of myself and see myself as others did. She squinted in the light and when she read things, it she brought them right up to her nose. I did those things too, but never gave much thought as to how those behaviors might look to others. In so many ways, that meeting changed my life forever. As a direct result of our meeting, Jan and I and six others, including my mom and my step-dad, founded NOAH, the National Organization for Albinism and Hypopigmentation (www.albinism.org), a non-profit that provides information and support for people with albinism and their families. 33 years later, NOAH is thriving and considered one of the leading resources for people with albinism.

Through my work with NOAH, I’ve met many other people like me and formed lasting relationships, including one with a special man. Pat Laughlin was an early member of NOAH’s board of directors. Sometimes she’d bring her son Tim to board meetings and we’d hang out and were just friends. In 1994 the NOAH national conference returned to Philadelphia and attracted more than 400 attendees. At that event, Tim and I saw each other for the first time in a few years and the rest, as they say, is history. We were married two years later.

We talked early on about wanting children and the likelihood that they would have albinism. It was thought that Tim and I had the same type of albinism. which means that, we only had defective genes to pass on so there was a 100% chance our children would be affected. We proved the theory in 2000 with the birth of our daughter and again in 2004 with our son. We were very fortunate to have very supportive families. We were raised to live to the best of our abilities and not to use albinism as a crutch. We were encouraged to ask for help when we needed it, but to seek and find our own limits. We were college educated and self-supporting. We figured we’d be in a good place to support kids with albinism. We already had shades on the windows, an ever-growing collection of hats and gobs of life experience.

Because of the support I’ve had, I view albinism as an inconvenience. Not everyone is that lucky. Some parents can’t handle a child with differences. The children are raised to believe that they are victims of their albinism and I personally find this hard to stomach, especially in light of the conditions that PWAs in Tanzania are born into. Albinism is a challenge, but to me, in the bigger picture, it is an aggravation.

The first reports of people with albinism being attacked in Tanzania came in 2008. On June 13, 2013, the United Nations adopted its first ever resolution expressing concern at the attacks and the “widespread discrimination, stigma and social exclusion suffered by persons with albinism.”

In 2014, surrounded by representatives from albinism support organizations around the world, the United Nations declared June 13^th International Albinism Awareness Day. The day is set aside to raise awareness of albinism and encourage increased human rights for people with albinism the world over.

2015 is the first International Albinism Awareness Day and groups around the world have scheduled events and educational opportunities. Today, I tip my hat and raise a bottle of sun screen to honor my fellow albinism advocates who have worked so hard to shed light on the atrocities and bring equality and basic human rights to people around the world.

For more information about please visit these websites:

International Albinism Day www.albinismday.com

The National Organization for Albinism and Hypopigmentation (NOAH) www.albinism.org

Under the Same Sun (UTSS) www.underthesamesun.com

Asante Marimu www.asante-mariamu.org

United Nations Website on Albinism albinism.ohchr.org

Time Passages – Congratulations Ed & Kristen

August 29, 2013 · Leave a comment ·

My mom talked to their moms when they were both just tots. I’ve watched them grow up and then grow together. We share a genetic condition that identifies us, but doesn’t define us. They are a decade *cough* or two behind me.

We’ve been to many of the same events and share some fantastic memories. As they grew and matured, they became leaders in the albinism community. The people that parents sought out for information and reassurance. She’s an pediatric oncology nurse and he’s a tech guru with mad video skillz.

They met as teens. Her mom pulled me aside and asked what I knew “about this Ed kid”. I told her something to the effect of “relax, he’s good people.” Six years later when the finally “clicked”. He tried to introduce her to me. Like I hadn’t been following both of their trajectories for eons. Not meddling, but not really surprised when they became a couple either. I laugh and still bust him about it to this day.

I get a strange feeling when people who are on the periphery of my life comment or congratulate me on a life event. Though now that I’m the one watching time pass, I have a better understanding of why it happens. It’s a small sense of pride. Do not get me wrong, I am not trying to take credit for the awesome adults they are today, no that lies squarely with four parents who loved, challenged and set expectations. I was just part of the so-called village. I stood on the sidelines and cheered. Occasionally offered advice when it was requested (sometimes when it wasn’t). Mostly, I watched in awe as two kids grew and matured into two amazing, successful adults. Taking notes all the while so that my kids can benefit from their experiences. I hold them up to my kids as examples of what you can become with hard work and dedication.

I was truly honored to be invited to their wedding. The celebration of their marriage, the joining of two amazing human beings and two wonderful families. Congratulations Ed & Kristen. Thanks for letting me be part of your village and thanks for being part of the village that supports my kids.

2012 NOAH Conference

July 5, 2012 · 3 Comments ·

Author’s Note: This post is rather specific in nature, it is intended to provide information and support for people attending The NOAH conference in St. Louis July 12-15, 2012. NOAH is a national non-profit that provides information and support for people with albinism (albinos) and their families. Members and interested professionals gather every two years to learn the latest information and share experiences. Over 800 people are expected to gather in St. Louis next week. What follows is my personal perspective and does not necessarily represent the policies or perspectives of NOAH or it’s leadership. I hope it is helpful.

NOAH’s 2012 Conference is just days away. I’ve been to every NOAH conference and still, I get excited every time I read the schedule and pre-conference materials. Attending a NOAH conference is like attending a family reunion with people you’ve never met. Despite the fact that most the people in attendance are strangers, everything and everyone are very familiar. It can be overwhelming. Overwhelming in a good way, seriously when have you ever seen so many people that look like you in one place? Overwhelming in a more challenging way; wait, which shirt is my kid wearing? Overwhelming in terms of the amount of information shared both actively (in the sessions and in the conversations with other attendees) and passively (by observation of all that goes on around you).

To minimize information overload, take a look at the schedule at-a-glance in advance and make some general notes about which sessions appeal to you. Upon arrival, you’ll be given a conference program with full descriptions of each session and you can refine your choices from there. Don’t be afraid to take a break to catch your breath and process what you’ve heard. Not all learning goes on in the sessions. While the they are chock full of useful information. Some of the most powerful experiences happen in the halls between sessions or at discussions around the lunch table.

Be prepared for an emotional roller coaster. You’re only human if you experience anxiety going into a new situation. Be patient with yourself it will pass as you grow more familiar with the hotel and the conference space and as you meet other attendees in the same boat. There is a map of the conference space online. Take a moment to print it out and familiarize yourself with it.

Conference highs come as you share experiences with others and reinforce that you are not alone. There is a thrill that comes from learning new information and maybe finding a solution to a nagging problem. There’s fear and frustration as you hear tales of the challenges that some people face dealing with schools and employers. The albinism community is diverse as the population of the U.S. Not everyone deals with challenges in the same way. Not everyone is in the same place on the journey towards albinism acceptance. Try to keep an open mind and respect the differences as much as you appreciate the similarities. Keep the information that is useful to your situation and disregard the rest.

This is going to sound obvious, but remember that most of us can’t see well. You and I hit it off on Friday, but when I see you again on Saturday, you’re wearing a different shirt. I’m not sure if you are the same fantastic person I spoke with before and I am leery of making a fool of myself until I’ve invaded your personal space to read your name tag. <grin>

Now, a few thoughts on how the conference is run. I’ve attended every NOAH conference. I’ve was local conference coordinator in Boston in 2000 and National conference chair for the following three conferences (Concord, CA, Atlanta, GA and Minneapolis, MN). Have you ever seen the carnival act where the performer is spinning plates balanced on the tops of long polls? Running a NOAH conference is JUST like that. Unlike a corporate conference, registration fees do not cover the costs of executing the conference. A conference for over 800 people is now managed by two staffers and as always, executed with the help of a horde of volunteers. It is worth noting that neither staffer works full-time for NOAH and the conference doesn’t even account for 1/4 of their job responsibilities, although I can assure you, that some days it feels like the conference is 110% of their job. Where conference planning is concerned the focus is on providing a top-notch, safe, educational and enjoyable experience for the minimum amount of money.

When you read hotel banquet services menus, they always list the price of an item and then ++. That means plus service fee, (fee charged by the hotel to cover the cost of staffing, and facilities, typically 18-20%) AND plus local and state taxes (anywhere from 5-20%). It is the ++ that drives the cost of a cup of coffee from $3.50 to over $5 and when you multiply that $5 by two-thirds (not everyone drinks coffee) of the adult attendees at this conference you are rapidly approaching $2,000 just for morning coffee! When you consider that the cost of dinner typically STARTS at $14.95++ for chicken caesar salad (no beverages, no desserts), I hope you can understand that most non-profits including NOAH, prefer to spend money in ways that better serve their members.

When thinking about the programs offered or how things are run, please remember that these are volunteers giving up their own personal time to educate and enrich the albinism community. Before you complain think about how much time you have to work on a conference?

Now, for some practical tips:

Wear layers. Hotel temperatures are NOTORIOUSLY fickle. One room might be a deep freeze while another feels like a sauna. Having a sweater or a light jacket will improve your conference experience.
Bring your favorite data collection device. Doesn’t matter if you are old school (pen and paper) or high tech (iPad and wireless keyboard), have something with you to capture information. There will be a lot of it.
Bring your favorite data sharing device. You’re going to meet a lot of people some of whom you’ll want to stay in touch with. Bring business cards, Post-It® notes, or your phone. So you can give your contact information to others.
Always allow yourself extra time to get to and from conference sessions. Elevators can be a bottleneck (they are also a great place to meet people). Until we develop effective transporter beams, it is better to add 10 minutes to your planned departure time to insure you arrive on-time.

I have special memories from every NOAH conference. At the first national conference in Minneapolis, the teen discussion group ran so long we had to relocate to another room twice because no one wanted the discussion to end. In Chicago ’92, the young adults took over a helicopter pad. In Philadelphia I reconnected with the man who would become my husband. There is always at least one memorable elevator experience. It Atlanta, my four year old daughter met another little girl who had “alvinism”, just like her. Despite having been to every NOAH conference since she was born, that was the first time she made the connection. In D.C. in 2010, my son found his own “posse”. No doubt about it, NOAH conferences are magical. I can’t wait to see you all in St. Louis.

A Low Vision Moment

June 20, 2012 · 1 Comment ·

Vertical photo of my perspective as I was walking down the sidewalk of the strip mall — Next time I was there, I took a picture, but of course the offending balloon was gone.

I do not see as well as most of the population. I am extremely light sensitive which has lead me to walk in to more than a few stationary objects as I’m blinded by the sun. I say “Excuse me.” only to realize I apologized to a parking meter or a trash can. I also have no depth perception. Most of the time, I do a pretty good job of faking it, but every once in a while, I have a coping mechanism failure of epic proportions. This is the story of one those moments.

Recently husband and I were having lunch at a local restaurant, nothing fancy, just the breakfast/sandwich joint in the only strip mall in town. This strip mall is home to a hair salon, a candy store, a gift shop, a contract postal station and the pizza place (small town living people). After we placed our order, I headed down the sidewalk to the post office. I could see the candy story had an a-frame sign out and beyond it, a woman was striding towards me carrying a yellow mylar balloon with a smiley face on it I could only see the balloon, no face. Being my chipper self, I said “My aren’t you smiley today”. As soon as the words were out of my mouth, I realized she was NOT in fact carrying the balloon, it was attached to the a-frame and the wind was blowing in such away that it blocked her face.

With an annoyed smile on her face. She said, “Don’t even get me started.” in a way that let me know she wasn’t happy, but she wasn’t annoyed with me either. As she entered the hair salon, I tried to explain, but my words were a jumbled mess and she was on a mission.

Oops!

Ah, life with low vision.

FYI – Hermansky-Pudlak Syndrome

December 7, 2010 · 3 Comments ·

Hermansky-Pudlak Syndrome (HPS) is a rare genetic disorder that affects people from all races and nationalities. The HPS Network is a volunteer, non-profit organization that provides information and support to people with HPS and the medical professionals who treat them. The purpose of this post to help The HPS Network spread the word. Make sure you read all the way to the bottom for a little giveaway.

Imagine you have a beautiful baby. You are starting to suspect that she doesn’t see quite as well as she should. Like most babies learning to move through the world, she’s uncoordinated, but she also appears to have difficulty focusing on people or objects at distance. Her depth perception is off and she frequently bumps into things, perhaps more than the “average” child and she bruises easily.

When you take her for a check up, the doctor notices a bruise on her arm that looks like the imprint of your fingers. You explain she was about to go headlong down a set of stairs and you grabbed her arm to catch her. The next thing you know, Child Protective Services is at your door accusing you of abusing your daughter.

Sounds like an episode of Law and Order no? Sadly, it can be a reality for families of children with Hermansky Pudlak Syndrome (HPS). According to the HPS Network website, HPS is “is a genetic metabolic disorder which causes albinism, visual impairment, and a platelet dysfunction with prolonged bleeding.” People with certain types of HPS, also accumulate a waxy substance in their bowels, and/or their lungs or kidneys. The manifestation of HPS can be mild to debilitating.

Despite my work with albinism advocacy, I had never heard of HPS until my late teens when I met Donna Appell and her beautiful daughter Ashley. Donna is a force to be reckoned with. She founded the HPS Network in 1992 to educate those affected with the condition and the medical community as well as promoting research to improve treatments. She’ll kill me for even mentioning her here because she doesn’t want recognition, she’s too busy spreading the word about HPS, but the advances that have been made in identifying HPS patients, and improving treatments are due in no small part to Donna’s efforts. These days, she has a board of directors and a small but merry band of volunteers to support the efforts of the HPS Network. One of those volunteers is Heather Kirkwood. Aside from being skilled in all things communication and outreach, Heather is also a talented artist and sells some of her works to support the efforts of the HPS Network.

People with HPS albinism all suffer from problems with their blood clotting. It can be minor as in they just bleed a little longer than most, or it can be life altering as in minor dental work can require a hospital stay. I think it is important to note that despite these challenges, people with HPS can lead “normal” lives with simple precautions and connections to medical professionals who understand their special needs.

We take our good health for granted. The minor scrapes and cuts are easily forgotten, but for people with HPS, they can be life threatening. When I was twelve years old, I was out riding my bike with friends when another “friend” jumped in front me. I swerved to avoid her, but lost control of the bike and ended up slamming my head on the bumper of a car parked on the side of the road (these were the days pre-helemet). I don’t have HPS, so it only took five stitches to get me on the mend and back on my bike. How about you? What was your worst or most memorable childhood injury?

The HPS Network has produced as set of notecards featuring one of Heather’s paintings. I have a set of 10 notecards and envelopes to give away. To enter, just leave a comment telling me about your most memorable childhood accident. I will pick a random winner on Friday (12/10).

For more information about HPS, or the HPS Network, visit their web site. Want your own notecards? Visit the store at the HPS Network website and order yours today!

Live Fearless Lee

Or at least that's what I tell myself