Interview With Eileen Tchao, Whose Family Diagnosed Her Rare Brain Disease From A Book | AsianCrush

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Interview With Eileen Tchao, Whose Family Diagnosed Her Rare Brain Disease From A Book

Otter Lee July 13, 2018 August 20th, 2019

Eileen Tchao was a hardworking, high-achieving college student getting ready to study for the LSAT when she succumbed to the unimaginable. What first manifested as fatigue and headaches turned out to me much, much worse. Eileen swiftly began to suffer from psychosis-like symptoms that were so bad, her family compared it to being possessed and the doctors thought she was on illegal drugs. Eventually, she fell into a coma.

The Tchaos needed a miracle. They had watched their daughter’s consciousness and body deteriorate, and doctors still had no idea what was going on. With barely any time left, they discovered Brain On Fire, an autobiography by New York Post writer Susannah Cahalan. Susannah had been diagnosed with the rare, almost unknown Anti-NMDA Receptor Encephalitis. Her symptoms and story were extremely similar to Eileen’s.

Getting in touch with Dr. Souhel Najjar, the same physician who treated Susannah, the Tchaos were able to save Eileen.

Since recovering, Eileen’s been sharing her harrowing story with the world. She also aced that LSAT and got into Albany Law School. Last week, she and her father Dr. Tchao along with Susannah and Dr. Najjar were featured guests on Megyn Kelly TODAY. We were lucky enough to get our own exclusive interview with Eileen.

Otter Lee (AsianCrush): Thank you so much for taking time out of your busy schedule to join us for this interview.

Eileen Tchao: Thanks, Otter! I’m happy to help spread awareness and honored to be interviewed by you.

What was your college experience like in the moments before you began to suffer from Anti-NMDA receptor encephalitis?

My college experience was hectic to say the least in the months before I became symptomatic with Anti NMDA receptor Encephalitis, or Autoimmune Encephalitis. I was so caught up in trying to achieve everything and do everything and be this perfect image of this perfect asian role model- I had just finished the first semester of college with a 4.0 gpa and received a Spellman Award and the honor of being on the Deans List, so in a lot of ways, I had a lot of things going for me- but in a lot of ways, it was too much to handle and to live up to. Once the bar was set, it stressed me out and added to my fragile mindset- so I thought that it was just stress that was making me crazy, but it was really the disease and everything else going on. Surprise, surprise! It’s something that you would never think of when you run a list through your mind of things that could be or would be wrong with you when you feel off- you think that you’re just not getting enough sleep, so in my case, I started sleeping more and going out less (not that I went out much to begin with) and just withdrawing from social life in general. I was constantly stressed and unhappy but couldn’t figure out why; I seemingly had everything going for me.

What were your hobbies outside of school?

My hobbies and interests include anything musical, nerdy, or theatrical. I spent many Friday nights watching movies at Crossgates mall instead of partying in college, and I have played violin in the symphony orchestra every year I could. I also sing and dabble in other instruments. I like to watch anime, too! I go to conventions when I can and love them every time.

Your father referred to your symptoms as being like a “broken robot.” Do you have any memories of those moments near the beginning or middle of your ordeal?

It’s kind of funny, actually. My dad has showed me videos he took of me performing these cyclical, repetitive actions. I would go downstairs, announce that I had to study for the LSAT (I had priorities) sit down in front of the book for a couple minutes, then move to the couch and lie down, then go outside and say I wanted to go for a drive. Then I would go back upstairs and rinse and repeat, over and over again. I have absolutely no recollection of this period of my life, and the girl in the video seems like a stranger to me. But everyone is forgetful sometimes and goes into a room only to forget what they went in there for- so imagine doing that over and over again. Due to the disease and the ECT (Electroconvulsive Therapy) treatments, I don’t remember any of it really, only little flashes of memories from the hospital and maybe some things before and after I woke up, but not really during.

So your mother was the one who discovered Susannah Callahan’s book Brain On Fire and your father was the one who placed the call to Dr. Najjar. How has your relationship with your parents changed since everything that happened? Are they more protective of you than before?

My parents are definitely more protective of me than before, now that everything is said and done. As a 20-year-old who has gone off to college in Albany, and graduated from college and is now going to law school, they freak out if I come home from work late and I have a 10 o’clock curfew. Most 20-year \-olds probably don’t have a curfew at all, but I understand where they’re coming from. If they were strict and protective of me before because I am the youngest child they have, they are definitely more so now. But I guess I owe it to them for their peace of mind, right?

Have you gotten the chance to speak or correspond more with Ms. Cahalan or Dr. Najjar since your recovery? Did you end up reading Brain On Fire or seeing the film based on it?

I actually met Susannah Cahalan for the first time when I went on the Today Show, and it was an incredible experience. It was like meeting my real life hero. She was so warm and vivacious in person, and she was so easy to talk to, like a close friend. She really does have a bubbly and gregarious personality and she was really lovely to meet and talk to and share my experience with. Honestly, meeting her was such a surreal experience and she is such a good role model and advocate for the encephalitis community. I have read and reread Brain on Fire and watched the Netflix movie a couple of times since my recovery period, and I have to say, Susannah really does an incredible job of capturing the entire experience firsthand even though she, like me, doesn’t remember anything about the time period when she was afflicted and sick. Through investigative journalism and thorough interviewing alone, she was able to piece together this incredible story which has so many similarities to my own. I watched the movie on Netflix, and I thought that the acting of the seizures was very on par, and the medical pieces were very accurate. The book was a better depiction of the disease and everything that accompanies it though, in my opinion. I have seen Dr. Najjar for a number of follow up visits and checkups, including bloodwork and a spinal tap to check for residual NMDA antibodies. He is always very warm and caring and I am always very glad to see him. I am indebted to him for saving my life and I hope he continues to save other patients lives and trains other doctors to do so as well. He really is a real life Dr. House.

Your treatment and recovery took 9 months. Do you have any recollection of that time? Do you remember waking up to your parents in the hospital?

I really don’t remember waking up in the hospital, though there are many pictures of the event. I remember one time when my friends visited me in the hospital, a little bit after I woke up, though I am still not clear on dates and times during that period, where we walked around- I couldn’t communicate well enough to say much, though. The recovery period took 9 months in total because, even though I woke up within 1 day of the correct treatment being administered, I had to relearn everything from scratch. How to use a spoon, how to read, how to write, how to speak–everything!

How did your story get picked up? What was it like being a featured guest on Megyn Kelly TODAY?

It was actually Dr. Najjar who suggested that I tell my story on the Today show, and that is how it got picked up. He was slotted to be interviewed with Susannah for a feature because Brain on Fire was bought by Netflix as a featured film, and was finally on Netflix and able to be watched by everyone, and the network wanted one of his patients as proof that her book saves lives and as proof that Dr. Najjar himself saves lives. I was happy and excited to do the interview and to share my story and experience with the world, and to be given this amazing platform to do so. It was so surreal to be featured on Megyn Kelly TODAY. She was such a lovely and intelligent woman, and you could tell that she really cared about every story she anchored and really did her research on every story.

I saw the segment. It was so informative!  Congratulations on your acceptance into law school. How much extra time did you get to study for the LSAT? Did you go back into the studying process with new hope or energy?

Thank you so much. I really got right back into it, albeit a bit later than planned. I had planned to take the September 2016 or December 2016 LSAT, but that didn’t go as planned. I went back to school in January 2017 and enrolled in an LSAT prep course for the second time, just to brush up on some strategies to help me prepare, and I took the June 2017 LSAT. I did retake it in February 2018, but I wasn’t actively studying or taking a prep course after the first LSAT. So I guess you could say I bought myself an extra year to study with my illness, hahaha!

Has your perspective changed at since your diagnosis and recovery? Did you have a good support network of close friends?

My perspective has changed a bit since my diagnosis and recovery. I don’t take anything for granted anymore, I guess. I know that I used to be able to do some things very easily that don’t come as easily anymore, but I am still very grateful to just be alive, even if it’s hard sometimes. I had a good support network of close friends before my illness, and some of them have drifted away as I have come to terms with what has happened, not necessarily through any faults of their own, but rather because it’s hard to be friends with someone who’s only thing going for them is being sick, and being bitter about being sick- i’ve learned to let it go now, but in those first months of recovery, I was really emotionally charred, and I think it showed to those who always knew me to be a reasonable person.

Do you have any advice for anyone who might feel like they are succumbing to an undiagnosed or invisible illness?

Yes. Talk to whoever will listen. Talk to your primary care physician. Talk to your friends and family–they will advocate for you the most. Make sure they listen. Often times, it isn’t the doctors that really make the diagnosis- it’s the patients and their families- they know the patients themselves best.