Good evening I am brand new to the group Today Beth reached out to me and let...

Growing up, I was always involved in sports. I began dance and gymnastics when I was four years old. I started to play soccer and softball when I was five years old and basketball and volleyball soon after that. I really enjoyed these activities and made many of my best friends while participating in them. I always knew that something wasn’t quite right though. Sure, at first I thought maybe I just wasn’t as good as the rest of the girls my age. They could run circles around me and seemed to be very coordinated. I would run and not be able to keep up. It seemed all of my friends had so much energy while I could not catch my breath and want to sit down. My ankles hurt constantly. My mom thought maybe I just had weak ankles. I still kept playing sports and trying hard to do well at them.

Looking back on the past four years of high school, the everyday struggles of an average student were overwhelming. The peppy, high school girl, prancing through the hallways of school just really might be deteriorating inside. Hiding behind smiles and filling your schedule with endless activities are a high school student’s forte. Truth is, every person you meet is fighting a battle within themselves. My mom was always there for me through all of it. She always knew how to be positive and make me feel better. She always made me feel good about myself and gave me the hope and strength to keep pushing forward. My mother has always taught me and demonstrate for me to push through. I admire my mother because she has always been strong. She was diagnosed with Addison’s Disease when I was a little girl. Her and my father divorced in the midst of all of this and my mother was a single mother. She taught school during the day and sometimes in the evening to make extra money. If even she wasn’t feeling well, she made me feel like I was the most important thing to her. She has shown me that nothing can get us down and that fighting is what we have to continue to do.

At the beginning of my story I told you what I wasn’t good at and what I couldn’t do and hadn’t done. So now I want to tell you what I can do and have done and will be doing. Even though I fought hard and played soccer, volleyball and basketball through my sophomore year of high school, it was at the end of that school year that I decided I was going to focus on academics; something I was good at, and give up sports. Academics was something my body could do, as long as I wasn’t in too much pain, or sick. My junior year in high school, I started to take classes from the community college, in addition to my high school course load. In fact, I have enough credits to be considered a sophomore next year, which will actually be my first year of college at the University of Northern Iowa. I have maintained a 3.74 GPA while doing all of this. At the same time, I have worked at least 2 jobs (currently 3) at one time. I have purchased 2 (very, very used) vehicles all on my own with money I have worked for. I have helped my single mother by paying for my own clothes and activities the past three years, until this past year when she remarried. It’s not easy either because I often miss school due to the Behcet’s Syndrome. There are times that I’m not sick, but I still can’t be at school because too many others are sick.

I still remember that day in October of 2016 when I was finally diagnosed with the chronic illness, Behcet’s Syndrome. I was told there is no cure, but there is a medicine that could help with the symptoms. I am currently taking that medicine. With every drug comes side effects too. It is a daily battle to work through the side effects, as well as the symptoms from my illness. I was so angry and didn’t even want to talk about it. I finally decided one day that I wasn’t going to let it hold me back. After all, what I ever really wanted was a true diagnosis so that I didn’t have to keep going to doctors in search of something. I’ve been told many times that I need to tell my story. I need to share with people my story to bring awareness to this evil illness. So this is my story. I can tell you that I have definitely been blessed with this illness and I received is a challenge to succeed despite it. I am blessed to have so many opportunities and the family and friends who support me. So, I guess you could say that my fantastic, heartwarming story, is actually the presence of a fighter…..Also known as……..Emma Marguerite Lonneman.

%d comments
  • Welcome! ♡

  • Destiny Callahan is a young warrior too. You all amaze me ♡

  • Welcome and what a well written story! and my daughter is also 18 and senior in high school and fighting every day to not let Behcets win. Mikayla Evans

  • What an inspiring story! Thanks for sharing!

  • Amazing! I'm so sorry you suffered so many years undiagnosed! My son was 3 years old when he had his first symptoms and we thought it was hand foot and mouth, then the tongue ulcers. They came every 3 months like clockwork but then the night sweats and screaming pain. After at least 15 different Doctors, me researching day and night and a trip to NY to see Dr. Y he was diagnosed at 6 years old. I can't imagine the suffering you must have endured your entire childhood. If it weren't for the internet I truly believe your story would be my sons. God bless your Mother for always being there for you.

  • Great story

  • Welcome, my daughter is 18 as well.

  • Thank you so much... your son is in my thoughts as well ❤

  • I'd love to talk with her!

  • Hi and welcome, wow you must be so proud of her! I have 4 children and 3 of those have disabilities. Those also have elhos danlos syndrome which I passed onto them so wether the other stuff is linked who knows. My daughter like yours is amazing and takes it in her stride and still battles on, she is 16 and 17 in May. She has elhos danlos syndrome, at 4 wks old she contracted viral meningo encephalitis (which is usually the type you get with bd which is weird as very rare) this left her severely epileptic until about 3yrs old so was very delayed, it also left her deaf but she wears 2 hearing aids which help a little but she can't hear vowels so she lip reads everything and copes great, she sees faces and hears voices and has done all her life but thought it was just a kid thing until it was still happening when she was about 10 I thought it was something not right, the last few weeks she has been diagnosed with autism and ADHD which 2 of my boys have but she is totally different from them and never been naughty! I didn't realise it could present differently in girls. I'm a bit annoyed as she was diagnosed with social delays age about 10 so they have known all of her problems but never done anything. She was also born with kidney defects and had her severely damaged kidney removed last yr as it was making her blood pressure go up, her other kidney has scarring but it has grown bigger to compensate for only having one functioning kidney and she is doing fine, just need to monitor her bp now and she will always get kidney infections at times as she has a grade 4/5 kidney reflux. But she has only had one since surgery and got her to hospital within hrs to get the right meds so it did no further damage.

    She is at college doing catering and loves cooking, she cooks my meals for me as I can't cook as can't lift the pans ect and can't stand for more than a few mins as I get severe tremors. She is my angel and just gets on with things. It amazes me how kids just accept things and get on with them. My daughter has mouth ulcers all the time and it freaks me out but when in hospital so far her crp isn't high at all so not indicative of Behçet's. But I guess I will always have that worry.

    Your daughter has such a way with her writing and it's heart warming to read. You have raised an amazing young lady and you should be very very proud of yourself doing that alone is not easy as I've been a single mum at times. My daughter also helps me care for her younger brother when I'm ill who until a couple of weeks ago was tube fed his whole life somshe would sort his tubes out and the feed pump ect and give him his meds through his g/j button. But now hope fully he has turned the corner and that should be removed very soon which will be so odd as he has had ng tube until 2yrs then a,ways had a tube coming out of his stomach.

    Kids are just amazing and take whatever is thrown at them.

  • welcome to this amazing group. I don't know what I would do without it

    behcet's warrior's together xx

  • Sent you a pm

  • Welcome and thanks for sharing! This group and everyone here is amazing and supportive. With the good and the bad.