To anyone affiliated with any sort of media outlets, regardless of its community (i.e. Bay Area, Korean), please note that So-Yeon and her family have asked for space and privacy during this time. She’s already going through a tremendous deal and I would hate to see anything to cause her any more stress, which exacerbates her symptoms.
I totally understand your intention to support the cause but please respect the wishes of So-Yeon and her family.
Please do not publish any stories anywhere without permission from either myself or So-Yeon. Anything coming from gofundme is fine to share and should be considered the official information.
Thank you so much for your support. Let’s continue supporting So-Yeon in a way that is comfortable for everyone.
Hi. My name is Rachel, and I would like to tell the story of my friend So-Yeon. She has Postural Orthostatic Tachycardia Syndrome (POTS) and small-fiber neuropathy. She is a 4th year international student at UC Berkeley, trying complete her double major in two sciences. In November of 2013, I got a call from a nurse in the ER saying she was barely conscious. When she woke up, doctors realized that because of extreme weakness and dizziness, she had lost the ability to walk without assistance. Doctors were at a loss to explain why this was happening.
Life was very hard for her. As she’s told me many times, she wasn’t even living “day to day” she was living “minute to minute.” Fun activities like going shopping with friends or baking her favorite blueberry pie were out of the question. She was bedridden more than 90% of the time. To her, it seemed more like she was battling herself, and less like a fight against this mysterious disorder. Despite numerous visits to numerous hospitals and a multitude of expensive tests and procedures, without a diagnosis she did not receive the medical care she needed. Doctor after doctor was stumped. No one had ever seen a case quite like hers. She needed to know why these things were happening to her and she was not going to give up until she found out.
One day, she told me it felt like she was going to have a heart attack every 30 minutes. She would have severe chest pain, shortness of breath, rapid palpitations, sweating-- and these symptoms only got worse over time. Sometimes, just standing up can cause her to faint without warning. Most days, she cannot take meals or move without significant help. A myriad of symptoms-- nausea, dizziness, weakness, neuropathic pain-- simply will not let her. I couldn’t imagine living this way. Myself and the rest of her friends were very concerned. We wanted to help her but we couldn’t. There was only so much we could do and it wasn’t enough. The mounting medical bills strained and continue to strain her financially, and only make her daily battle more difficult. She can’t afford any in-home care and her parents live almost 6,000 miles away.
Finally, late in August 2014, she was diagnosed with POTS and small-fiber neuropathy. The condition is also known as a Grade 3 Autonomic Dysfunction , or Dysautonomia. Her brain and other organs fail to receive enough blood, which essentially means that her body doesn’t do what she needs it to do. This explained the sudden weakness and inability to walk. Finally, she had an answer.
To combat the symptoms she suffers from, her doctor devised a complex treatment plan. Despite the long road ahead of her, she is confident that by adhering to this plan she will be able to return to a normal life. This is all she asks for. The plan consists of pharmacological therapy combined with substantial lifestyle changes. This includes nutrition therapy, physical therapy, and cardiac rehabilitation. Sharing a meal with her is like eating with the pickiest eater on the planet-- only that she doesn’t have a choice. Eating the wrong foods or not getting enough nutrients can be devastating and significantly exacerbate her symptoms. The restrictions are endless. Her diet includes no gluten, no sugar, no dairy and a whole lot of salt. To be precise, she must consume at least 5 times the recommended daily salt intake. While this may seem extraordinarily unhealthy, for her it is a necessity. One of the symptoms of POTS is orthostatic hypotension (a form of low blood pressure), which the salt and blood pressure medication help correct. Thankfully, she is in the 6th week of this rigorous 8 month treatment plan and already feels stronger.
She is one of the most resilient and independent people I know, but she needs your help to continue her treatment. Without it, her condition is unlikely to improve. However, because of the accumulation of medical bills from uninsured tests and therapies, hospitalizations, co-pays, prescriptions, countless trips to the ER, and medical supplies, she cannot afford to do so. Due to the accumulated medical costs so far, she has rendered her family abroad in immense debt and can no longer rely on them as a resource. But by donating any amount, my friend will be able to get every aspect of the treatment she needs and deserves. The funding will allow her to afford the next 8 months of the treatment, and give her the peace of mind she needs to get better. She does not deserve to stay sick simply because she cannot afford the bills. I think it’s safe to say that nobody deserves that.
Our goal is 30,000 US dollars. That may seem steep, but for someone who has such a debilitating and complex disorder, it barely scratches the surface. Without additional funds, she’ll have to stop the treatment plan and go back to her country, where there currently is no established protocol or treatment for POTS, let alone doctors that are even aware of it.
Thank you very much for reading. If you cannot donate, please take the time to share her story with others. She deserves it and the world deserves her back on her feet. After everything she’s been through, I cannot wait to see her POTS-symptom-free with a degree in her hand.
With your help, she can get back to her health, her life, and her goals.
DonationsSee top donations
- carol renee
- Shilin Chen
- Hyo Shin
- Hyo Shin
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Contact us with your questions and we’ll answer, day or night. Learn more