NOAH AOC

The Albinism Online Community
Welcome to NOAH AOC Sign in | Join | Help
in Search
Ad: Get involved in research

How can I find a doctor that specializes in Albinism?

Last post 06-09-2009 7:43 PM by Brittany Griffin. 7 replies.
Page 1 of 1 (8 items)
Sort Posts: Previous Next
  • 06-09-2009 10:36 AM

    • Kaycee
    • Top 500 Contributor
    • Joined on 05-04-2009
    • Arkansas
    • Posts 36
    • Points 885

    How can I find a doctor that specializes in Albinism?

    I feel a little bit without hope right now. That sounds drastic, but I just don't know where to find a doctor who knows anything about Albinism. We do see a Pediatric Opthamologist, he is the one who diagnosed Carrah. However, her pediatrician has no clue what I was even talking about when I discussed it with her. She told me it was NOT a Genetic condition. I almost cried because it made me so angry. Anytime, I have an issue come up that I would like some answers, she has none. She always says "I know nothing about Albinism, so I am no help."

    What do I do? Should I call her PO if I have questions? My questions were about her Strabismus that she is developing. It's actually become quite severe. Her right eye turns completely in when she if focusing. She also has a head tilt. She only does it when she is trying to focus in on something really hard. Also, last week she had a horrible bloodshot eye in the eye with Strabismus. It worried me and our Pediatrician had no clue what to do. I called the PO, but they were in meetings all day, so it all just got to me, I think.

    Any advice? Do you know any doctors who specialize in this that maybe we could see?

    • Post Points: 65
  • 06-09-2009 12:56 PM In reply to

    • Marc
    • Top 150 Contributor
    • Joined on 09-15-2008
    • NJ
    • Posts 66
    • Points 890

    Re: How can I find a doctor that specializes in Albinism?

    There aren't any doctors that limit their practice to albinism.

    Our son is about 2 1/2 years old and we have been to many doctors (primarily eye doctors) searching for answers but I think that the best information we have gotten is from others in the albinism community.  Nothing could compare to the wealth of information that we learned at our first NOAH event just by talking to others in the community.  What has worked for them as well as what hasn't.

    I would suggest that you do indeed ask your PO questions that pertain to her strabismus but at the same time you can feel free to ask questions here.  Additionally, use the search feature on this website to search for posts that deal with topics of your questions (ie strabismus.)

    If you are not confident in your pediatrician or PO (we weren't) then you can move on.  Eventually you will find a doctor (or team) that you are comfortable with.

    Of course there will be questions that you may not necessarily want to share on a public forum.  That's where creating friendships is so important because you can then e-mail, im, text, or even meet in person. 

    My wife (Andrew's Mommy) spent the better part of a year on this website, both asking and answering questions virtually nonstop.  We have developed some incredible friendships with a number of NOAH families. Jill has also met a number of people through Facebook that are involved with the albinism community.

    We have heard some unbelievable stories of things that doctors have said regarding albinism.  Personally, I believe that the best second opinions come from the members of NOAH because then you are dealing with multiple opinions and not just first or seconds.  Eventually you will find your path.

    Good luck and know that things will work out in the end.  You are not the first to go through this experience and you won't be the last.  NOAH's greatest resource is its members.

    • Post Points: 5
  • 06-09-2009 12:59 PM In reply to

    Re: How can I find a doctor that specializes in Albinism?

    Yes, call the PO if you have questions.  Generally, the pediatricians have no idea.  One of the ones in our group is pretty knowledgeable about it and always asks questions specific to her vision during her annual visits.  But I don't think the others really know which is why we tend to stick with him.  If I have any questions, I either ask the PO about it or honestly, I mostly just ask them here to find out what other people's experiences have been.  This board is fantastic for getting answers.  I'd say as long as your PO knows about albinism and can answer your questions, you're okay.  I'd be surprised to find a pediatrician who is well-versed in it unless they happen to have other patients who have it.  You can try a post on these boards asking for recommendations from those who live in your area.  Or, if you're hooked up with your state's Commission for the Blind and Visually Impaired, you could try asking them for a recommendation.

     

    Hang in there.  It'll all be okay.  We've all been there before.  And we've all had those days where there seem to be no straight answers.  Just keep advocating for your daughter and she'll be in good hands.  

    • Post Points: 5
  • 06-09-2009 2:24 PM In reply to

    Re: How can I find a doctor that specializes in Albinism?

     Five years ago, I walked out of the pediatrician's office and never went back to him.  He was my oldest son's doctor and was fine, but when Zach came along with OCA, he was completely clueless and even gave me the wrong information.  One day, I reached my limit and walked out.  I came home and called my insurance company and asked who were some other doctors in my network.  I knew the one doctor and called her office immediately.  She was not taking new patients but I explained the situation to the secretary and asked for her to please pass it on.  Within an hour, the secretary called back and said the doctor would take both my kids as patients.  I made an appointment and we saw her the next day!  She was wonderful, caring, and knew about albinism!  She didn't specialize in it, but she had previous patients from her studies in Africa and her son had a friend who had OCA.  

    About 1 year later, she left town with her husband.  So, I was back to square one.  However, I was more confident with my knowledge by this point.  I called up a new doctor in town and spoke directly to her.  I explained the situation and she said "I don't know much about Albinism, but I am willing to learn".  That is all I needed to hear!  She is wonderful.  She NEVER assumes she knows more than me.  She always asks about the PO visits and what the latest is on his vision.  She always helps with papers/forms for special referrals or special services--she trusts that I know what it best when it comes to his Albinism.  I respect her for not acting like a fool and assuming she knows all.

    Good Luck--it may take time, but you will find a good medical team that will begin to know your child and Albinism well.  Once you find that--everything seems to go so much better.

    Jo

     By the way, we live in a VERY small, rural town so if I can find good doctors--you can too with alittle work.

    • Post Points: 20
  • 06-09-2009 2:40 PM In reply to

    Re: How can I find a doctor that specializes in Albinism?

    Jo brought up an excellent point.  I also love that my pediatrician trusts my opinion about my daughter's needs and whenever I ask for forms to be filled out in a particular way (i.e. making sure her school medical form indicates the need for sunscreen as a medical issue), he is happy to trust me.  And I always feel like his questions are a way for him to learn more about albinism which I can only hope will help some other family down the line.  He doesn't act like he knows more than me simply because he's a doctor; he's happy to learn from our experiences.  And with the amount of educating that we've done for ourselves as parents of children with albinism, we probably do know more about albinism than most pediatricians! :)
    • Post Points: 20
  • 06-09-2009 3:29 PM In reply to

    • Kaycee
    • Top 500 Contributor
    • Joined on 05-04-2009
    • Arkansas
    • Posts 36
    • Points 885

    Re: How can I find a doctor that specializes in Albinism?

    Thank you all for your help. I didn't think there were Pedatricians that limited to Albinism, but I had to at least check :) She isn't even willing to learn, like some of you said yours were. She acts like I don't know what i'm talking about, yet she admits she doesn't have a clue. I posted this on my blog when it happened and so many people told me to try and get a new Pedatrician. I think maybe I should.

    I agree that i've learned most everything I know about Albinism from the community on here. It is very helpful. I need to be more active on here and i'm sure I will learn even more.

     Thanks again for all of your help. I really hope to come to a conference soon and meet some of you!

    • Post Points: 20
  • 06-09-2009 4:00 PM In reply to

    • courtney2
    • Top 75 Contributor
    • Joined on 06-07-2006
    • milton, PA
    • Posts 122
    • Points 1,915

    Re: How can I find a doctor that specializes in Albinism?

    You may also want to consider someone who does Family Medicine.  Sometimes I feel like pediatricians get so used to seeing the same things over and over again, they just don't always listen to parents.  I never had a problem with albinism, but with other illnesses they were just like, "I've seen this a hundred times. This is what it is,"  and they just don't listen to me.  I switched to a family physician, where we all go, and have been able to develop a better relationship with her.  It feels like the kids are a welcome break in her day, and she makes an extra effort to be involved.  Could just be my personal experience, but thought I would mention it.

     Courtney

    • Post Points: 5
  • 06-09-2009 7:43 PM In reply to

    Re: How can I find a doctor that specializes in Albinism?

    I agree with what everyone else has said.  Pediatricians deal with general growth & development and illnesses in kids.  They may have heard of albinism briefly in medical school, but I guarantee you that most people on this board know way more about albinism than any pediatrician.  That's because we have come to "specialize" in it to a degree. Big Smile  Like others said, the willingness of a doc to listen to you and learn about the condition is what's most important.  I would find a doc like that and you will feel much better, I'm sure. 

    By the way, the next conference is in D.C. next summer if you can make it!  I think a lot of us will be there! 

     

    • Post Points: 5
Page 1 of 1 (8 items)
Ad: Get involved in research
Add our Google Gadget to your iGoogle page
Add to Google
Powered by Community Server (Commercial Edition), by Telligent Systems