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Problems with college dorm not willing to make accommodation for daughter w/ alopecia universalis
My daughter is 18 years old and about to be a freshman in college. She has Alopecia Universalis which she was diagnosed with in 8th grade. She desires to go away to college and try to spread her wings a little bit. At the college she wants to go to, it is required for freshmen to live in the residence halls (dorms). She has been very hesitant to go off to college due to the simple fact that she is so worried about privacy issues with the rooms and bathrooms.
She is emotionally not at the point where she is comfortable with anyone seeing her without her wig on. The college only has one residence hall that offers private and semiprivate rooms/bathrooms. The rest of the residence halls have large community bathrooms.
I called the Student Access Office to talk about my daughter filing a request for housing accommodation due to her medical condition. The lady I spoke with was very cold, dismissive and not compassionate. She said the Access Office is only responsible for removing barriers to access for students with disabilities and my daughter’s condition did not meet this criteria and they did not need to make an accommodation just to make her feel more comfortable.
Does anyone know of any recourse, or supporting documentation I can submit about what an emotional toll Alopecia can have on those afflicted with it? I appreciate your time and any assistance any of you can give me.
Replies to This Discussion
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Permalink Reply by Tricia on
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My 18 year old daughter is also a rising freshman, heading to college in September. I went through her colleges website first to figure out a way. She filled out an on line form called "Special Accomodations Request" found in the colleges Residence Life section. She also had her pediatric dermatologist fill out a required disability form. We were then assigned a Coordinator for Student Support in Residence Life that was her advocate in helping her get the housing situation she was going to be comfortable with. She has been assigned a single on a girls only floor that shares a communal bathroom. Did you find any departments pertaining to students with disabilities? This is the only time my daughter has classified herself as having a disability. She has had Alopecia since she was 1 year old and wears a wig. Who ever you spoke with was just awful. I would keep calling until you found the right person, department to help your daughter. The response you received from that college representative had to of been a violation of the Disabilities Act. Keep trying.
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Permalink Reply by KFruth on
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Hi there,
I recently graduated from college, and I have Alopecia Totalis. Although I do not wear a wig I wear a bandana and it's a similar concept. I lived in a dorm with a roommate and communal bathrooms. I didn't want my roommate or anyone else seeing me without it on. I found ways to keep my privacy. I can't say that it wasn't inconvenient at times. I think the large dorm halls with all the people and their personalities is an experience every freshman should have. I would love to talk to you and your daughter about my experience.
Kelly
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Hi! I am 19 years old and just finished my first year at college. I have a very similar story to your daughter and didn't want anyone to see me without my wig or even know about my Alopecia. I lived on a freshman hall where I had to share a room and a common bathroom. If I could tell your daughter anything it's that living on a freshman hall was one of the greatest experiences of my life and I don't want Alopecia to take that from her. Sharing rooms and a bathroom without much privacy is how she will make the friends she will have for the rest of her life and it is key to truly enjoying a full college experience. Although I did build up the courage to tell my entire hall about my hair, the only person to ever see me without my wig was my roommate. When I showered I stayed behind the curtain and hid my wig under a small towel in my shower caddy. When I slept I locked the door and asked my roommate not to let anyone in. I hid my wig stand under my bed. Other than that there were really no problems. She will get used to it after a few days and will learn to brush and style her wig while it is on her head (I mean I guess most people have to do that anyways haha). I would highly suggest not living in a private hall, she will miss out on a priceless college experience. Don't let Alopecia take that from her. I understand she is scared and uncomfortable, I went through the same thing, but there are plenty of ways to live on a normal hall and still have a little bit of privacy. Message me if you would like any tips about living with Alopecia in college, I am happy to share. Good luck! Let us know what she decides!
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Wow, I hate you were treated so rudely. I certainly wouldn't give up yet.Maybe try to speak with someone either above the rude contact, or contact the student counseling center. They might be able to find someone else for you to speak with. They can sometimes set up support for the student from the time they arrive on campus. If your daughter is willing to have a support/go to person at school to help her navigate this new chapter in her life, I would seriously look into that. I have AU, so I completely understand your daughters concerns, but I hope she can find a way to do what she wants to do/go where she wants to go and not let AU stop her! (My daughter had anorexia when she started at a large university, and also had housing concerns that no one was interested in accomadating. Going thru the counseling center from the very beginning was a wonderful resource for us, and helped her navigate the huge transition to college. She's a rising sr now, and says having someone to go to from the beginning gave her the confidence to risk going into an environment she was extremely anxious about.) Good luck!!
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Sorry to post again but I see that a few of you have daughters in the same position. My best is advice is to live in a normal dorm room, seriously. I will give you all the tips I know about hiding your alopecia while still living with people. I understand how scary it is, but I can't imagine missing out on living with all my friends just because of alopecia. College is stressful enough and you are going to want people to come home to at the end of the day. Please live on a normal freshman hall, you won't regret it. I am here if you need any help, don't be scared, college will be fun, even with Alopecia :)
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Permalink Reply by Jonathan Cobb on
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This sucks, but maybe your daughter can take this opportunity to start to become more comfortable with her alopecia. I can’t preach too much on this as I have had super cool AU since the 2nd grade and I am 31 now. 50% of the time I wear a hat to avoid what I perceive as people staring at me when in reality they are more than likely just looking at my chiseled features (total joke :). It’s easy for us guys to cover it up with a hat so I can’t even imagine what it’s like for a female. I just graduated from a law enforcement academy and was not allowed to wear a hat inside which was understandable in an academy setting. Not only could I not wear a hat they also assigned me to a desk in the front of the whole class… Super awesome. At first it was a little uncomfortable, but after a few days I became more comfortable with it. People knew I didn’t shave my head because I don’t have eyebrows and would ask me about it. I educated them on alopecia and moved on. No big deal. To get back on point, your daughter can use this as an opportunity to educate others on AU. The only way we can become more comfortable is if we put ourselves in uncomfortable situations and learn to thrive in them. Tell your daughter not to ask for special arrangements. We’re stronger than that. I know it’s not going to be easy, but you will become a stronger person if you just put yourself out there. Some people are always going to be mean, but give all of them a chance to understand and they just might become friends for life.
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I'd send an enail with a link similar to this. It can be a emotional disability a d under the disability a t the have toa do something. http://www.parentcenterhub.org/repository/emotionaldisturbance/
I would go above her head and seek out the dean of school or anyone that out ranks her! This is completely unacceptable and this lady likely has no idea what alopecia is, unless you know someone or have a family member experience it, they have no clue how emotionally draining it is at time and further more she shouldnt have to suck it up and share with strangers until she is ready, which maybe never! So mad for you!
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Hi ,
I am so sorry for your daughter . No one knows the trauma of losing hair and adjusting and privacy issues regarding the condition.------UNLESS they have been through it theirself. Even if you know some that has this emotional issues over it; it's truly hard to feel what they feel. I have alopecia and had many issues but I am older and have finally accepted it and wear a wig.. It s a very sensitive issue for young people meeting and greeting and dating people Hopefully she will find a wig she loves.....NOT likes, but LOVES ! and she will be comfortable. I too, suggest talking with a doctor. A private room will save her a lot of anguish. I truly know how she feels. Good luck with everything.
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Go to the youtube channel "Abby Andrew". She is an amazing college student with AU, and has quite a few videos about how she handles living at college with alopecia. She also answers her commenters..so I would have your daughter check her channel out and have her ask abby questions!
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I love Abby Andrew, same as meandmyshadow!
Call the best source: the National Alopecia Areata Foundation, for how to handle this. They can probably tell you exactly, legally what you need to back you up.
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Get a prescription for a private room
Not only will they likely honor it, chances are it will make all of her housing 100% tax deductible (medical deductions typically have to exceed 7-8% of your AGI -- which won't be hard to do since housing is typically real expensive at 4 year colleges)
Good luck!
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Permalink Reply by Hannah on
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I am currently getting ready to attend my third year of college. I, too, have Alopecia Universalis and was diagnosed at the end of 8th grade. I would just like to say one thing...
I do not consider myself to have a medical condition, and I for sure do not have a disability.
Yes, it is an awful cosmetic condition. It is unfortunate and unlucky, and I would not wish it on my greatest enemy. But treating it like something it is not is creating excuses against living life.
While I am not yet comfortable going out without a hat or skullcap, except with my family and closest friends, it has not stopped me from being a decorated collegiate athlete, making friends from all over the country/world, and living it up in college.
I believe full-heartedly that the college was in the right to tell you that your daughter's chance in getting special housing is slim to none. There are people with real physical and mental disabilities that are in serious need of the housing, and an uncomfortable cosmetic condition does not rank high on the priority list.
College is a time to reinvent ones-self! No one knows who you are and you can be whoever you want. Yes, it is scary, but it's scary for anyone going away to school! Not just those with alopecia.
Go ahead and scoff at my post, but I'm just laying it out like it is. Alopecia Universalis is only a hindrance if you make it one. My parents didn't let my shy away in the shadows, and I was not willing to let it come between me and my love for volleyball.
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