NOAH AOC

Hello to all, I just found this forum and am trying it for the first time. My name is Guadalupe and have recently moved to Arizona from Alaska. I plan to attend the conference in July also for the first time. I am latina and a person with albinism. I have been to Vegas before but this will be the first time traveling alone and I am excited and nervous about the trip. I hope to form new friends and be informed about albinism. I am very interested in sun protection espacially with my recent move.

Welcome to the forum!  

 I am new here myself as of yesterday and unfortunately  won't be at the confrence this year in part because I will be overseas at that time. : /   It sounds like a wonderful opportunity to learn and meet new people.

 I hope everything goes well for you!

Thanks, where are you headed, and is this a vacation for you?

I'll be heading over to the UK for ... I think 8 days,  then  staying in Chicago  for 3 to visit family before heading on back to Seattle.   This is indeed a vacation, and my first time traveling to europe.   I've wanted to go for years, and when the opportunity presented itself  I quickly said "Yes!" and started planning for it. :) 

 It sounds like you are a fairly recent arrival to  AZ, I can only imagine how different that must be from Alaska.   How is it treating you so far? 

Hi  back Guadalupe, My name is Erika and my parents lived in Arizon for a couple of year while I stay in school in Calif. Whenever, I wnet to visit and we went out, I used a sunscreen 30 or more. Copperone has a new spray on sunscreen that I love. I used it the past summer while outside during VBS and it worked I also used it last Oct when I went to Disney World. Make sure to get around and behind your ears. The new spray sunscreen is great because you can do it yourself. I used it on my face as well. I use Lancome moisturizer and it was an SPF 15 built in. I will admit that I do not use sunscreen each day like I should because I only go out in the sun when going to and from the car or to get the mail or take out the trash.  Arizona is a beautiful state and it is a dry heat. LOL. See you in Vegas.

Wow! Europe o tpp have always wanted to go; one day ot will happen. Tell me all about it when you get back.  Yes it has been an adjustment from AK to AZ but a good move, especially with programs for the visually inpared. Although I miss my kids, they have decided to enroll in the university in Anchorage. I guess you can say I am going through the empty nest thing.

Have a wonderful time on your vacation.

Thanks for the advice, I will look into those. Could you tell me of they are oily I hate to feel greesy. Hope to find you in vegas.

 It should be fun.    I have no idea of what to expect culturally!   I think it's going to be really disorienting speaking the same language as everyone around me, yet not understanding half the slang. 

 Well I'm glad to hear that the move is going well for you.   Good ones are always better than stressful ones.  Sorry to hear about that "empty nest" feeling that you're experiencing.  Lonliness is a bugger. : /   Did you move out to AZ  by yourself?

I had an Ex  who lived in alaska  a few years ago...   IThe difference in climate alone must be jarring.    I'm really sensitive to changes in the seasons  and even day to day weather  if it suddenly gets much hotter or cooler.   It's like my body just wants to shut itself down and reset itself over the course of the next few days  to  adapt when that happens.   It's wierd. 

 Thanks!  I don't leave for a while yet but it should be fun.    With any luck I'll be able to break away from the family for a few days  and  explore the city by myself -- I kinda like the feeling of being in a place so far away from home where no one around knows who I am.   It makes me feel free. 

 

Actually they are not. I have a hard time with lotion and other moisturizers because I cannot stand theat film like feeling on my hands. Coppertone is also water proff so they work well when you perspire or glow. LOL. When I do wear it and I sweat, I always have a handerkerchief near to wipe because thet stuff gets near my eyes and causes them to water. I got my conference pack yesterday and there is a first timer session so all of those I have been talking to who are also new to NOAH will probably be there.

erika evans:

Actually they are not. I have a hard time with lotion and other moisturizers because I cannot stand theat film like feeling on my hands. Coppertone is also water proff so they work well when you perspire or glow. LOL. When I do wear it and I sweat, I always have a handerkerchief near to wipe because thet stuff gets near my eyes and causes them to water. I got my conference pack yesterday and there is a first timer session so all of those I have been talking to who are also new to NOAH will probably be there.

This is part of the reason I hate the summer.  I essencially come in three different colors white, pink, and red.   I don't like the oily texture of many sunscreens against my skin, so I try to just stay inside the way many people do during the winter.   Fortunately,  living in Seattle,   the climate is manageable, and I think we have more overcast days than bright and sunny ones.   People at work always think I'm wierd for distaste of summer, and even nicked named me the "White Chocolate Vampire" when I'd always close the blinds  behind my desk during some of the most "beautiful days." 

There's a thing in Oregon  I want to go to in August  that is  outside all day for three days but last time  I went I came back so burnt that I  looked like a fire engine.   When people ask I tend to say "Summer is of the devil" because it's so darn uncomfortable and bright.

Ahh well.    lol sorry.   Your comment got me started on one of my "I hate summer" rants.  For more than one reason I prefer to be a night owl. 

Thanks for lrtting me know. I too got my packet tiday and saw that there is a session, is this your first conference? I am trying to get my son to join me but he just got a new job and is not sure yet. It would be nice to have someone along that I know, espacially to help me get around.

I know what you mean, I am soo sunlight sensitive even with sunglasses. but I am not the one to like being in the dark, that was a problem in AK during the winters. I am now using an umbrella instead of suncreen but I will try that copertonw that Erica mentioned I would lide to have a free hand especially because I carry a cane with me so I don't get hit bu a car when crossing the street.

Suppose I can't say for certain, but I suspect my light sensitivity  is not quite as extreme as most other folks in this community as I don't actually have albinism (that I know of).    I'm just a person with very fair skin and  eyes,  who deosn't get along well with bright lights or or sunny weather due to burning  and  having sensitive eyes. 

Oddly enough though,  through exposure to the NOAH community and reading this and other web sites I've come to wonder if it's possible for a person to have OCA2 or OCA3  albinism and not realize it for a good chunk of  their lives.    I wonder because:

- I do have visiual acuity problems, though not to the same extent  that other people describe here, as well as another problem which causes my eyes to not focus together.  Vision therapy has helped alot to retrain the muscles in my eyes to work together,  but it still hits  me just as bad as it ever did before VT if I'm extremely tired or relaxed.  

- As I said before both my skin and eyes  are light sensitive to the point where I'd rather just avoid the sun all together if possible (which sadly isn't all that practical).     : /  I've been sunburned on my face just sitting in traffic  on the way home from work, though I would not call that a 'common' experience.

-  My eyes are a very light shade of blue.   I wear colored contacts  just because ...   I like playing around  with different colors... and even wen I where  transparent  blue ones  I am startled  at how much lighter my eyes are when I take them off at times.     when I'm not wearing colored contacts they also change color  a bit. 

- My hair is mostly medium to darker brown,  though there's also alot of  light blonde/white ones mixed in there. I don't usually notice it when I look in the mirror (perhaps due to not so good vision and blurring everything together?)   but I find them alot in my brushes  or on dark surfaces  in places I've been.    It always struck me as odd. 

 

I don't know... part of me wouldn't be surprised if I were diagnosed just because I have so much -other- stuff going on with me and it seems like sometimes when it rains it pours when it comes to genetic conditions,  but on th eother hand I suspect it's probabaly not the case.     I don't have any real reason for believing one way or another except "It just seems like I'd know if I did have some form of albinism"   and "Well there's enough other stuff going on with my body chemistry, why not tack albinism on to the list?  At the rate I'm going I'll have cancer in 2 years, then discover I'm diabetic and severely allergic to nutmeg and the chemical used to produce new car smells."   

I seem too be more sensitive now more than ever, but I am not sure if it is the move or me or both. My doc says there is no change but I have a hard time believing her because I rather think its her not knowing than to think it's me going nuts. I find that i am constantly squinting to see something that I am sure I could see before or always looking down to see where I am stepping. My friend tells me to look up so that I don't run into things but that would mean that I could trip on something I did not see. That is where the cane has come into play. I have had to get use to carrying one around but now I find that it has made a huge difference in my life. I know walk with my head up, and feel better walking alone.

I too have had my share of sunburns which burns me up haha because all my family is dark skin even my kids and they do not have to worry ass much about the sun. I am the only one in my family to have this condition and it's kind of funny eo be around them and look so out of place.

My eyes also change colors I am told, I myself can't see that but they say blue to green to hazel. But I where mascara, I find that it helps shade my eyes from the light. So I have been confused for being ca cation. My hair I was told is the color of an apricot but my friend says that some of my hair are half black I guess that is my Hispanic trying to show itself, I did not believe her so she pulled one out and lo and behold there it was half blond and half black. last year i grew my hair out and donated thirteen inches to locks of love I plan to so this again but sometimes I get so hot here in AZ that I don't know if i will make it to ten inches the required length that they need.

I know very little about albinism so what you say about VT, OCA2 and OCA3 I am not sure what that is please inform me.

 

Oh!  Sorry about that.  "VT"   is an abbreviation for vision therapy.   As for OCA2 and 3. I'm fairly new to learning about all this as well.    The various forms of albinism are listed on NOAH's web page.    There are a lot more variations than I ever thought previously.  

 

Here’s a link to the descriptions presented on NOAH’s homepage. 

 

http://albinism.org/publications/what_is_albinism.html

 

That said my vision is OK but not grand.    I’m able to drive a car if I wear contacts, but have never bothered to try to take the test without them.   The other eye condition that effects visual tracking however is not remedied by contacts – it’s what required the vision therapy.   

 

Ahh well.   I can’t believe the weekend is already gone!  Hope you had a good one.  Mine was… caught somewhere between boring, thoughtful, and getting a bit of busy work done.

 

Just curious, but what made ya decide on Arizona to move to from Alaska?    I’ve only lived in Chicago, Pittsburgh, and Seattle.   Seattle is beautiful with a delightfully moderate climate – Chicago and I really didn’t get along.  The only places I could really see myself moving in the future would be either Brittish Columbia, someplace over seas, maybe Oregon, and California.    Sure, California also has weather I’m not fond of but I might be willing to make some sacrifices for the San Francisco community.