PCD Family Support Group (UK)
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Unwilling Staff and Principle

I have a 504 plan and I’m a junior in high school. I’ve had one since 7th grade because I’m absent a lot. Not only do i have PCD but I have a cyst on my neck that cannot be removed. Its wrapped around a gland and its causing me to get severe sinus infections. My school is currently trying to tell my that I will not get credit for this semester because of all the school I have missed.

At this point I’m so over being put down by my school and ridiculed for having a disease.

I don’t know what to do anymore. My principal is telling me that my sinus infections aren’t apart for my PCD. But it is and i know the for a fact. The cilia don’t work in my nose of ears. At this point they aren’t compliant with my 504 plan.

I have had nothing but trouble with this school. I’m just trying to graduate high school.

Does anyone know what I should do?

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Hi Gwen - sorry to hear you are struggling with school. I assume from your post that you live in the USA - we have a different system here in the UK. However I would recommend you get school to watch our video - what is pcd on website pcdsupport.org.uk - it might help them understand a bit better. Good luck

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I'm sorry to here you are having trouble with this issue.

First, I'd like to point out that unless your principal is a MD specialised in pulmonary or genetic disorders, he is in no way qualified to access the severity of your illness. My suggestion would be to obtain a detailed report from your PCD specialist detailing the severity of your illness and the infliction it has not just on your lungs but on your sinuses and ears as well.

Also, you can print out and show your principal some of the numerous studies done that connect PCD with various sinus issues.

To start with:

ncbi.nlm.nih.gov/pubmed/285...

ncbi.nlm.nih.gov/pubmed/253...

ncbi.nlm.nih.gov/pubmed/288...

Good luck.

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Hello Gwen

Presuming you are in the USA, I wonder if you have looked at the American PCD Foundation website and checked out any advice they can give you? As mentioned by Fiona (above) we have a completely different system, for dealing with special needs in a school setting, here in the UK, so it is somewhat difficult to advise you what to do for the best.

You can find the PCD Foundation on this website:

pcdfoundation.org

Good luck with how you are feeling right now and also with your future educational success.

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GwenVC, Are you kidding? I am incensed. I am a retired teacher, and one thing I know from my 25+ years of teaching in the U.S., you don't mess with a student's health, especially when you have a 504 plan or special ed accommodations (which I assume you do not have the latter). That principal needs to be censured. I wonder if you can get some protection under the Americans with Disabilities Act. That would hold your principal accountable. That would probably be a lot of work. For now, you need to find an adult who will stand up to the school administration. Another thing I know from my teaching is that the parents who continually insist and advocate for their children eventually get heard. You can't be "nice" or submissive when they say they can't help you. And you shouldn't have to do it yourself for two reasons: you have enough work on your hands dealing with your illness and your studies; and you are still a subordinate in the school structure. I wish I could go there myself and confront the jerk. Try to find an adult advocate. Maybe someone is available from your health institution or a community organization who advocates for people with special needs. Please write again. I will think about this. Be strong. It's hard to be strong with these health conditions. Keep in touch.

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Go to your school counselor with a doctor's note which explains about PCD and what accommodations you need to succeed in your studies. This website has great advice and printouts about PCD and for your school "http://pcdsupport.org.uk".

Also ask the school counselor to educate the principal or have your doctor call the principal direct to explain. When I was in college I had the same issues with the school program

co-coordinator who is trained in health sciences try to make fun of me when I explained I suffer from sinusitis and middle ear infection frequently. I educated her and got my school counselor to do the same. She was not impressed about educated by the the counselor and accommodated my needs with no more remarks....

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GwenVG,

I've been thinking of you a lot. Has anything improved? As with other people who replied to you, I agree that you need an adult advocate. There was lots of good advice.... school counselor, school social worker, school nurse, etc. How about the people who approved your 504 plan? I don't know how many school staff are involved in signing off on the 504, but there has to be somebody besides your principal. In my state, there are "Area Education Agencies" who serve the schools, including special student services. Maybe your state and area is served by some kind of agency? You should be prepared to spend your summer making up the assignments you were unable to complete..... can you approach someone to talk about this? I'm concerned about your unfortunate combination of health problems and frustration (not to mention all the issues being in middle school). Yet, I sense that you have some strength underneath. You care about school. You're doing the best you can, but you need someone to help you over this difficulty. You care about school, and you have a lot more school ahead. Your small-minded principal cannot just stop you on your educational journey. You cannot just lay down and let this anti-educator get in your way. But you need a helper. Then stand up for your education. If certain people knew that your principal actually tries to defeat students with serious health issues, he'd be in big trouble. How dare he do anything other than help you succeed. I hope to hear of your progress, GwenVC.

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Branch9,

I saw my pulmonologist today and she is calling my school tomorrow to discuss PCD and all its symptoms that come along with it. At this point I emailed all of my teachers and only my principal responded unwilling to let me make up missed work until my doctor signs documentation saying I have physically unable to attend school due to my illness. If she signs they will give me a home tutor for the rest of the school year.

And not to mention the fact that i’ve lost all of my friends due to my health. There is a difference between knowing someone has an illness, and understanding. They told me it was all in my head, I don’t make an effort, i want people to treat me differently.... but none of that is even close to the truth. At this point not only am I sick but my anxiety is through the roof about school. I just want to pass this year and be done with it.

Its one thins having an illness but its another to walk into school knowing everyone talks about you and teachers make rude comments to your face. And its hard enough being a teenager, but it just sucks having to deal with all of this.

I really am trying my hardest and I do love learning, its jus hard to motivate myself to go to school when its the one place where people look at me differently. My Mom is filing a lawsuit against my school and hopefully something will be done ASAP.

I just need some help and here help is just not something anyone offers. Here it is a terrible thing to be different.

I just hope the state see’s my hard work and lets my school know that discrimination is wrong.

I’ll keep you updated.

-Gwen

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Dear Gwen,

Oh, thank you for your update; you are a very good writer. I am simultaneously pumping my fist (Yay for your mom taking decisive action against your school), and heartbroken (your friends' lack of understanding and support).

Although I am an older woman, I have similar feelings as you, regarding friends, but not nearly so severe. I have a dear friend who is one of those anti-vaxer's, so she is very critical of me getting a flu shot or pneumonia shot. It makes me realize that even a close friend does not really understand what we go through with PCD, sinus infections, and lung infections. And I have lots of other friends who don't understand why I don't show up for our activities. But they're still nice to me. You are suffering a lot more. Even if you weren't sick, you would have many emotional struggles with teen friendships. I think this is the roughest time ever for any teen, what with social media, and all the covert ways that kids can wound each other.

I know this is going to sound ridiculous at first, but you need to find a way to deal with your peers so that it doesn't hurt you so much. Easier said than done. I have always felt like some of my peers were "looking at me that way," even as an adult and as a teacher. I've always felt "different." Perhaps you are extra sensitive like I am. (I'm even taking a class right now, learning about being sensitive). You should realize that you are a brave hero, dealing with your awful symptoms, and still maintaining your love of learning, still striving and doing your best. I started seeing a new kind of doctor, specializing in Functional Medicine, and as she learned my history, she called me a "champ." A champ for doing so much in spite of my health struggles. That has helped me a lot. A champ. Yeah, I am a champ. And you are a champ.

If you let your friends hurt you deeply, this will compound your struggles to be physically healing. Emotional pain and psychological pain is real pain too, and it has a negative effect on your body. You can't just build a wall against your friends, but you can develop a "thicker skin", and just accept the fact that they can't understand enough. Surely you can find a few friends you can trust, one or two friends, that you can cultivate and stay connected with. This should help you feel less isolated. And also, you are probably perceiving it to be worse than it is. While some may be "looking at you that way," most teens feel this to an exaggerated degree. If they are truly cruel types, they will find another target soon enough. Most are likely not that cruel, they are just insecure, and trying to deflect all the teen angst.

Hang in there, Champ! Thank you for staying in touch. Preserve your beautiful inner spirit as your body strives to be well.

-Anne Marie

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Dear Anne Marie,

Thank you for your kind words. I have made the conscious decision to not let peers at school control my outlook on life. I have been having anxiety about taking the time to go to school just because the way everyone thinks I handle it. I often hear the phrase “you don’t look sick,” which is true but that doesn’t mean I’m lying about my illness. I believe I am smart enough to make up my work and go into my Senior year next year.

What the school system fails to understand is I have aspirations outside of school. I want to study Musical Theatre in college and be on stage for my life. I know dance and physical activity is a struggle but being on stage is what I love. And i can’t even do that at school because the directors aren’t compliant with my 504 and they continue to allow others to make comments to my face and behind my back about my absences. I have to decide if I want to be known as the sick girl or the girl who never goes to school. Neither is a very promising option.

I have tried to find support groups in my area, but can’t seem to find any for teens with chronic illnesses. And PCD is so unheard of its hard to find other with the same condition. I have given therapy a try before, and i’m thinking of giving it another go. It can’t hurt.

We both definitely are “Champs,” for enduring all of this. We have learn to deal with our illness all while people continue to come in and out of our lives. And I definitely know how repetitive it can be having to explain your condition to a new group of people. I have a good group of friends throughout the US from theatre camp over the summer and the girl I’m closest too; Emma, even suffers from Fibromyalgia. We have a lot of late night talks and text each-other each morning to keep our heads up and just have a good day.

Its been relieving to know I’m not the only one who struggles when it comes to the social aspects of dealing with a disease.

I have a 504 meeting on Friday. And my mom is a special education teacher of 8 years and is ready to lay it all on the table. I’ll let you know how it goes. Thank you for your advice. I will take it to heart.

-Gwen

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Dear Gwen,

Thank you for sharing so much more about your life. Wow, musical theater! That is one of my passions also. So glad to hear of your summer camp, and how it is providing a flame of hope and joy.

And so glad to learn your mom is a special ed teacher. So she knows way more than I do.... While you are not special ed yourself, a special ed teacher is uniquely equipped with the tools of advocacy for students' needs.

Someone should go to your local school board meeting and tell your story. That principal must be censured.

Keep me posted.

Anne Marie

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Gwen, I have been thinking about you. Has anything changed? With school staff? with your health? did you get a tutor? I wish you ease in your life.

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Anne Marie,

I had a meeting with my schools staff and everything has been resolved. They let me drop 2 classes I didn’t need and I added two more study halls to my schedule. My mom threatened to go to the office of civil rights and even showed them the letter she had already typed up.

They just got scared and finally cooperated. But i’m still struggling in the friend department. I sit alone at lunch now and all my friends ignore me. They think i use my illness as an excuse to miss school. And that i’m faking it. I reported all of this to the principal because they have begun to post nasty comments about me on social media.

I went to school all last week and had a good week. I’m proud of myself. And I got a new job at an aquarium!

All is going in the right direction. And i’m headed back to Camp in Montana this summer. Thank you for checking in. I hope all is well for you!

-Gwen

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Gwen, I am so glad you feel good about the resolution. And so happy you are returning to your beloved camp this summer!

It breaks my heart to think of you alone at lunch, and suffering social media scorn. I'm surprised... do you have even one loyal friend? Maybe all the loyal ones are from camp. I hope they move on to someone else, and gradually come back to you, if they are smart enough to see that you don't have an agenda.

Overall, I am so surprised at your school district. My local district always bent over backwards to accommodate any and all learning needs and health situations. I am so sorry you have suffered the pain of your school staff and peers in addition to your health challenges.

But it is so important that you have this passion for theater arts, and you have goals and a direction. I've known so many really nice adolescents who did OK in school but just could not find their niche after high school or college. There is nothing wrong with them, but they don't have a passion. You're gonna find your way. I hope that some true friends come along with you.

Anne Marie

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Dear Gwen

It makes me proud to hear you did not give up on school and are getting the assistance and help you need to succeed in your education. I know that it can be tough to be the one who sits a lone. Get involved doing things you love and you will meet new people who have the same interest you do. As for the social media please tell your mom what is going on. She may be able to contact the social network on the net and report this abuse to get it to stop.

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