May-13-2020 | Shadazah Brown (known as Daisy)
A year ago we introduced you to Shadazah Brown in her piece, A Diagnosis for Daisy. Today she shares an update to her continuing journey.
December 31, 2019 at 10 p.m., I had a seizure at home. I woke up the following year, January 1, 2020, in the hospital. I didn’t even get to see the ball drop and celebrate with my family.
I woke up crying in so much pain, hooked up to the plasmapheresis catheters in my neck. Some of my hair had been cut for the EEG machine. My stomach hurt because of dry heaves. I felt like nothing.
Since my diagnosis with AE in 2017 — which began with a seizure in a store that caused me to split my forehead open — my seizure medications have been changed regularly to manage my epilepsy. I am also diabetic, meaning the steroid treatments have resulted in additional trips to the hospital to manage high- and low blood sugars. In that same time, the doctors have decided to give me plasmapheresis treatments every three months.
My depression has kicked in much more and I have lost all communication with my friends and family 
members. I think they understand what it’s like to be great living a normal 24-year-old life. Working, driving, had a boyfriend, friends, having fun. Then you go to worrying about yourself 24/7 because you the diagnosis requires it. I didn’t ask for this.
Being told you’re totally disabled at the age of 24 hurts a lot. I couldn’t celebrate my 25th birthday because I had plasmapheresis surgery since I needed the treatment right away. I still want to be able to work, drive, drink, party, and live a healthy young person’s life.
I miss having fun so much. I watch so many videos and look at pictures and I cry. People I thought were friends and truly cared, who would be there compassionately, haven’t been. I’ve spent the last two years alone. I have a couple of friends that are still there but remain somewhat distant.
Now that I have to go to hemoglobin infusion once a week for five hours at a time, I have made new friends who are actually older than me and they are really good people to talk to. (Sometimes, I really miss them and can’t wait until infusion… LOL.)
Become an Advocate by sharing your story. It may result in someone receiving an accurate diagnosis who is suffering right now and is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org
International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.
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Love you xoxo 💋
I remember the memories we have together growing up and I just want you to know I look at you the same way. I always pray for you and I will never stop. May god always be with you and you are beautiful STILL. Keep your head up because you are definitely worth it & we always want to see that beautiful smile of yours ❣️
Shoobie Auntie loves
you unconditionally! I admire your strength and drive to get urself well. You are a beautiful young lady and im proud to say you are my niece
You are so beautiful. And I’m sorry you are going through this.
Thanks for sharing your life! Continue to think positive.
Love you
Daisy, first I just want to say that you are absolutely BEAUTIFUL!! Secondly, I completely understand what you are going through and I feel your pain. I have a 20 yo daughter with AE. She began getting sick at 15 and we didn’t get a true diagnosis for 2 years. Unfortunately, you get stuck in a world of AE that most people don’t understand while your friends move on and continue with their normal lives. It’s like your life just stops while everyone else’s continues on as normal. My daughter has lost friends as well. It’s heartbreaking. I honestly don’t think the friends/family mean any ill will, it’s just that their lives have continued on and you are still in the same place, almost as if you went to sleep and woke up months or years later. You are still the same (just sleeping), while everyone else has continued on with their lives. It’s so so hard. It breaks my heart that this happens. Like you said, you certainly didn’t ask for this disease and you don’t deserve it. No one does!!
I don’t have any real solutions for you, unfortunately. I just wanted to tell you that you are not alone. Many of us who are either suffering with AE or have family with AE truly understand you. I am so very sorry that your family hasn’t been close by. I advocate for my daughter constantly. You deserve the same. You are absolutely beautiful and you are obviously extremely strong. It sounds like you have made a great recovery. Don’t let this get you down. Get out there and tell your story. Speak for other AE sufferers that can’t speak for themselves. Be an AE leader and get your voice heard. This might just be a blessing for you after all. Huge hugs to you!