My Noah <3

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Noah. Is my middle son.

When he was born, he was born with a head full of blonde curly hair.

He’s 6 years old.

An identical twin.

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A  recent kindergarten graduate.

& He has alopecia.

his twin brother has alopecia too,.. but it’s not as bad.

After hearing comments from other adults over the past few months.. comments that break my heart..  I honestly think these people say things about Noah’s head because they have no clue as to what’s going on. People are naturally curious. I shouldn’t expect everyone to keep their mouths closed and go on.. because that’s not going to happen. A few examples of what I’ve heard…while I was walking my boys to their t-ball game, a man passing by us said to the guy he was walking with,..”check out that skinhead.” I wanted to kick him in his manhood. .. is that bad?

At Old Navy, on Saturday, a woman said.. “What’d you do, shave your head??”  in a disgusted tone. I wanted to slap her glasses off of her head.

It’s times like these.. that as a mother.. I have to calm down my inner “I will cut you” feelings and realize that these people honestly have just never heard of something like alopecia. So it’s my goal to let all of you know exactly what is going on with my children.. and I say my children.. because both of my twins have this disease. It’s an auto immune disorder. You can google it and find out as much about it as you would ever want to know. It’s not contagious. My third child, Mason, does not have it.. yet. & I say yet.. because he’s only 3.. It could happen. It might not. Only time will tell.

When my twins were two, I started noticing little thin spots in their hair.. places where there wasn’t as much hair.. Of course me being the googler that I am.. I googled.. “hair loss in toddlers”.. Google answered with things like ringworm, hair pulling, and alopecia. The more research I did,.. I found out that Ringworm could be cured..children grew out of hair pulling.. sometimes with the help of a therapist.. but Alopecia,.. there was no cure. Not squat. Sort of a “sorry about your bad luck” kinda thing.  So, I hoped for the best.. but deep down inside of me .. that dreadful A word stuck around. I took them to their pediatrician.. and he said.. “oh mom,.. it’s just a crappy haircut”…Maybe so,.. I hoped.. but two years later when Noah fell off of a swing, and a huge bald spot on the back of his head occurred from where his head hit the rocks,.. I knew that alopecia word would soon be haunting me again. Soon, all of Noah’s eyebrows fell out.. next, his eyelashes. That bald spot soon grew.. and became the size of my palm. I took Noah to two different doctors last summer. Both of them treated him for ringworm. Me, being the paranoid FREAK that I am, I was washing sheets and pillow cases like CRAZY.. not letting the kids share towels.. you name it.. I bathed Noah in every tea tree shampoo known to man.  The twins started Kindergarten and I noticed that Nolan, too, was starting to get bald spots. Over Thanksgiving break, I took Noah to a pediatric dermatologist. She didn’t do any tests to him.. just walked in and said.. “He has alopecia”.. thanks lady… Google told me that. She prescribed an expensive “potion” cream for me to rub on his head twice a day.. This did NOTHING but burn him. He’d cry,.. huge tear drops would stream down his cheeks.. and he’d stand by a fan to help with the burning. After two weeks of hearing my child cry, I never put it on him again. By last Christmas.. Noah was completely bald. Nolan, Noah’s twin, still had most of his hair.. but had a few “patchy” spots. My husband would shave Noah’s head where hair was still growing.. growing at some weird texture and color that wasn’t his normal blonde and soft feeling hair.. And now it no longer grows.

Noah is a good sport about all of it. He doesn’t take as long bathing.. he doesn’t have to worry about the wind blowing his hair out of place.. although he does dream of one day having a mohawk. He tells everyone, “My Mommy says that I can run faster because I don’t have any hair!”  lol! 🙂 Noah’s  amazing Kindergarten teacher is letting her hair grow out to donate it to Locks of Love. She is such a wonderful person.. I can’t say enough great things about Mrs. Hamil. She has been so supportive of everything this past year.. encouraging to Noah about his “easier, no-grooming lifestyle”.. she made life so much more upbeat about it.. and while keeping something such as alopecia a happy thing.. it seems to also keep other kids from bullying Noah. I am so grateful to her about everything she’s done for us this past year.. not only teaching my sons EVERYTHING that they would have never in a million years learned from me.. because as all of you know.. Mommies know NOTHING.. about anything.. 😉 EVER!! Anyways, Mrs. Hamil, if you ever read this.. thank you.. from the bottom of my heart!PIN IT!

Nolan, Mrs. Hamil, and Noah 🙂

I wish I had as much courage as Noah does. He’s very active still. He’s a happy child..  has tons of friends at school. I’m not sure what other children think about him being bald.. but it doesn’t seem to phase them. They just know that Noah doesn’t have hair. Noah is only bald on the top of his head and doesn’t have eyelashes (well, I take that back.. he has three).. and no eyebrows. His body is still covered in peach fuzz. lol I dont think he’ll have a problem getting girlfriends later on in life.. he has three now.  😉 & hello? Bruce Willis is bald.. and very .. attractive 😉 .. Noah will be another Bruce. 🙂

So, next time you see someone that doesn’t have hair.. instead of saying rude comments.. just think.. oh! I’ve read about this.. It’s alopecia! & It’s not a bad thing! He’s a healthy child! Cool beans! & then walk on with your normal life.. and go chunk down $12.00 at pro-cuts to get your haircut.. and I’m totally laughing right now.. because Noah saves us about $24.00 a month in haircuts. Thank you, Noah.

xoxo,
Kristin

The medical term, alopecia is used to describe the loss of hair. The Mayo Clinic clarifies that different types of alopecia exist and each type may have the similarity of hair loss, but occur from different causes. Both males and females are susceptible to hair loss, with certain type of alopecia affecting specific age groups. Gradual hair loss is a normal part of the aging process; however, with alopecia, the daily shedding of hair exceeds the rate of regrowth, or new hair grows in thinner than previously. To accurately diagnose this condition, consult a physician when sudden changes in hair growth or loss occur.

The American Academy of Dermatology explains that androgenetic alopecia, commonly referred to as pattern baldness, is likely inherited from either side of the family. The risk for this form of alopecia increases if both maternal and paternal pattern baldness exists. Male hereditary hair loss typically occurs on top of the scalp, or as a receding hairline, whereas female hair loss occurs as visible thinning over the front portion and top of the scalp.
Alopecia areata hair loss is a non-life threatening autoimmune disease. The National Institute of Arthritis Musculoskeletal and Skin Diseases indicates that this form of hair loss often occurs in people with family members who also have some form of autoimmune disease such as rheumatoid arthritis or thyroid disease. However, most who develop alopecia areata are in good health and do not experience pain from the hair loss.
Chemicals used for dying, straightening or permanent waves can cause hair to become damaged and break off, but they do not cause alopecia. Hair styling practices involving heat, such as using a blow dryer, can leave the hair brittle, which can also cause breakage. Use of clips and rubber bands that pull the hair tightly also increase breakage of the hair. The Mayo Clinic explains that excessive hairstyling that pulls the hair can cause a type of hair loss referred to as traction alopecia. These styling practices will not cause permanent baldness in most instances if there is no extensive root damage, and once excessive use of dye, heat and pulling stops, the hair grows back normally.
Telogen effluvium is a type of alopecia occurs that when the normal cycle of hair changes. Essentially, this means the roots of the hair are put in a resting state, or stop growing, and then fall out. The Mayo Clinic explains that significant stress and hormonal changes, such as death of a loved one or pregnancy, can increase the risk for this condition. However, once the stress subsides, hair grows back in a normal fashion.

Read more: http://www.livestrong.com/article/183867-alopecia-myths/#ixzz1wOLgdjYc

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  • amy perry - My daughter Carlee Perry is on your list she lost all her hair at age 6yrs old she will be 15 yrs old next month and hasnt had hair for 9 yrs now!! We think your sons are so cute and its cool to see more children like mine with the same thing,we get rude remarks like does she have cancer,does she shave her head(come on please)on and on!! People run over each other at Wal-mart lookin at my daughter and we just laugh and go right on our way!! People have no respect,more adults than kids!! My e-mail is above feel free to email me anytime!! Nice to know there is some more,I know just how you felt when it happened!! Have a blessed day 🙂ReplyCancel

  • Jen Morais - Your boys are SOOOO handsome! Such beautiful children! I want to kiss his little bald head! XOXOXOXOReplyCancel

  • Molly Allen - your family is adorable and your sons are absolutely precious!! i had never heard of alopecia until you and i had discussed it one day. i love your optimism because that is the only way to be! 🙂 i love you and your family!!!ReplyCancel

  • Amy - My son also lost it all around age 3. I’ve ha my fair share of struggles but as you stated its the adults that are the cruelest. I was actually accused of not feeding him.ReplyCancel

  • Alopecia's Emotional Toll | Shear Pointe – We Restore More Than Just Your Hair - […] the entire story on Kristin’s Blog  This entry was posted in alopecia, alopecia areata, alopecia awareness, alopecia totalis, […]ReplyCancel

  • Anna-Lisa Parrish - I just found your post on Pinterest and I LOVE it! I was diagnosed two year ago at the age of 28. I understand people don’t know what this disease is and will make comments but some of the comments are just rude and the staring is obnoxious. Your boys are adorable and I think it’s so awesome that your family and their teacher are making Alopecia fun. That’s the way I deal with mine too and it’s made things much easier 🙂ReplyCancel

  • Beth - It was so nice to read your story! My son has alopecia as well. Started after the age of 2 and he is now 5. I feel the same way regarding people and their comments. Unfortunately, I still have yet to learn to calm my feelings. It is comforting knowing there are other people out there who feel the exact same way. Thank you for sharing!ReplyCancel

    • Cassie - Your post was amazing to read. My son started losing his hair around 1 years old and was totally bald with no eye lashes or eye brows by age 2. He is 3 years old now and still bald;) The comments and remarks are end less. Now I simple just respond he has Alopecia, look it up. The one thing really bothers me is that random people feel the need to rub/touch my son’s head, even in public/strangers. Hopefully more awareness will come. Thank you again for your post.ReplyCancel

  • alma - Thank you for taking the time to educate us. My niece who lives in Mexico who I haven’t met, I believe has alopecia she has lost all of her hair. So I’m trying to find more information to help her find some treatment that she can try. Her mother is limited in funds. Thank yu againReplyCancel

  • Alopecia's Emotional Toll - […] Read the entire story on Kristin’s Blog  […]ReplyCancel

  • Brittany - Hello,
    I am school counselor and I have a female student who has Alopecia. She has been bald all her life. I am having been trying to locate some information to help support her parents because they are having a hard time dealing with it and that trickles down to their daughter. I haven’t had very much luck. Any advice that you may have would be wonderful. Thank you.ReplyCancel

  • Lulu - Your twins are so handsome, and your story hits very close to home . I myself have identical twin boys born with a full head of curls who are now 8 years old. But only one of my boys Moses has alopecia. His started at around age 3 with a quarter size spot on the back of the head. I am blessed to work for an amazing group of Pediatricians and was able to get the diagnosis right away. We tried topical steroids which helped a little, but as soon as we saw growth in affectefy areas we would see loss in others. We have seen seen a local dermatologist and did steriod injections on his head, keep in mind we have allowed Moses to decide if he want to proceed with said treatment. My son wants his hair back so bad. Unfortunately Moses’ experiences at school have not been as positive as yours. I, like you, wish I could just slap the crap out of people at times. My sons 1st grade teacher had no clue what Alopecia was. I had to educate the school in order for them to understand. He was bullied on the playard, chased after and even got his hat taken away a few times by the bullies. I finally moved hom schools in last year, and is doing better. Moses last year lost 100% now has about 85% hair loss, although right now we are starting to see a lot of fuzz/white hair growing very fine. The other parts still feel normal, and at one point 2 years ago lost his eyebrows and most eyelashes. Currently he has almost one eyebrow back fully and half of the other as well as most his lashes. I don’t know what to do for him. We try to encourage him and give him support the best we can but it it very hard emotionally. Thank you so.much for sharing your story. By the way my 10 year old daughter just donated her hair in honor of Moses to the Pantene program because after doing her research she discovered locs for love charges clients for the wigs they provide. She plans to donate once a year in honor of her little brother and ithersy like him.

    :)LuluReplyCancel

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