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K**A
A piece of literature which was long overdue
As a German Ehlers-Danlos Syndrom patient which has many comorbidities I highly depend on english literature because that is the only way how I can find out more about treatment options and therefore improve my overall well being.Dr. Afrin is a world expert when it comes to mast cell activation syndrome and I was very happy when I saw he had written a book about all of his experiences.His book is completely different from what I had expected at first. Since I am reading every piece of literature that the very few specialists publish about mast cells I thought there could not be many surprises in this book. But I was totally wrong. While reading the patient stories there were many symptoms I too had experienced but that never anyone could explain to me. And now everything made sense. And keep in mind that I am already diagnosed with mast cell activation syndrome, and still every doctor I asked could not explain all of my problems. Dr. Afrin did, in only one book.It took me a while to merge with Dr. Afrins writing style because it is very different from what I usually read. At some points it is quiet confusing how he jumps from one patient story to his own thoughts and back. But after a short time it was even exciting for me to not know where this story goes and whats next. There even were some laughter in the book and I was able to finish it after only 5 days. Medical literature usually takes me longer than that.He gives a lot treatment options, plus he lets us all know what his personal experiences with those treatments are. Now even so far unexperienced doctors who have mast cell patients can access those information and maybe are able to treat us better.I also liked the way he made it possible for both, medical professionals and patients, to understand the content of the book. I have not read many medical books were doctor and patient can benefit from the information in it.What I also really like is how he has a patient story to every organ system or symptom that could possibly occur and how he is not scared from telling his opinion about what is wrong with the health system. He even mentioned many times what he thinks where mast cell research goes without knowing so far. I loved being a part of his thinking process and even without knowing him I would love to be his patient.The only critic I have is that I was surprised to see that the Appendix with explanations of all medical terms in the book (which is good) was almost half of the whole book. But still the prize is very affordable for an amazing book like this and I would highly recommend it.This is the kind of doctor we need more of and that is a book with the potential to help all doctors with already diagnosed MCAS patients OR with patients with so far unclear confusing bizar chronic symptoms. I wish what he already knows might soon reach other medical professionals and help us get better treatment options.With this book he made it again possible for me to be my own specialist and to take care of my own treatment. This is not only empowering me as a patient but could also lead to my doctor being more confident in treating me.
K**T
I wish I was Dr. Afrin's patient (yesterday)!
In summary:I recommend learning a bit about mast cells before reading this book. I've researched MCAS for years, so I was comfortable digesting all of this information at once. If you believe you have a mast cell disorder and there's more of an allergic component to your symptoms, this book might throw you off a little. Dr. Afrin is actually a hematologist, not an allergist. The case studies he discusses are very unique to his field, but I still find them relatable; they're also a great testament to the complexity and vastness of mast cell dysfunction. If you're overwhelmed by 30 chapters, I recommend at least reading the foreword, Chpts. 4-6, Chpt. 18, & Chpts. 23-28.Edit:Yay! I finished the book (which is a miracle in itself- no lie). Reading & retaining information has been a struggle for as long as I can remember but became an even more glaring issue when I got sick in 2011. I am, however, still thumbing through the appendix. One obvious oversight I've found is that 'Cromolyn Sodium' (aka Gastrocrom in its oral form) is not described in the appendix. I was only disappointed because I wanted to hear Dr. Afrin's thoughts on it. Though, one thing I did learn in Chpt. 25 is that scientists aren't entirely sure how Cromolyn works to target mast cells; in fact, some believe that it doesn't target mast cells, but rather nerve cells. Lastly, my mom (who has fibromyalgia, etc) and my aunt (who has CFS and hypothyroidism) were both recently diagnosed with hyperparathyroidism. My aunt had a parathyroidectomy and though it's been about a year since the surgery, she doesn't feel any better. My mom has not had the surgery and I don't think she intends to as long as her vitamin levels and bone density test continue to look 'good'. After reading Dr. Afrin's book I'm starting to wonder if there's a mast cell component to my family's presentation of hyperparathyroidism. I was actually tested before my aunt and mom because an ENT recommended I look into hyperparathyroidism after my lip biopsy came back negative for Sjogren's; however, my PTH lab came back in the normal range. So many questions. I hope Dr. Afrin finds time to write a supplement to this book, but I totally understand if that's not where his focus is right now.Original Review:I've been trying to stray away from reading medical literature 1. Because after more than a decade of relentless symptoms and research I'm honestly just tired of it, and 2. Because what we focus on is what we get. In my defense, though, chronic illness isn't something you can simply ignore away. I know I have many skeptics, and hell, what these skeptics might not know is that I'm a skeptic, too. When I purchased this book I hoped it would give me some peace of mind, and restore confidence in my diagnosis (i.e. Was it prematurely diagnosed?, etc). I'm just 30 pages in and already the first case study reminds me so much of my own weird and prolonged medical journey. I could feel years of doubt and degrading messages from doctors melting away. The most important person to trust and validate is yourself. But it's also okay to receive validation from those that truly understand what you're dealing with- Lawrence Afrin is obviously one of those people and lucky for us, the chronic illness community, he's also a well-respected doctor. With that said, though, I'm grateful for the compassionate doctors that I've found locally and I'm becoming more forgiving of the doctors that aren't capable of listening without judgement. I hope by the last 30 pages of this book I will still feel the same enthusiasm as I have in the first 30 pages. I find myself wishing I could see Dr. Afrin but also remind myself that I can self-advocate and utilize my current Allergist to request the helpful lab work mentioned (much of which I've already requested from doctors over the years) throughout this book. I appreciate the honesty, compassion, determination, and vulnerability that Dr. Afrin displays throughout his book. I feel less shame and more pride in my journey after flipping through page after page and highlighting all the similarities that could be drawn from my own experience with multisystem symptoms. One thing that sticks out most is the relentless and incredibly intense feeling of being revved up x100 (it's like your foot being stuck on the accelerator and your car finding a new way to fuel itself even long after the gas has run out). I've yet to find anything to calm that symptom and honestly have no idea how I've managed to push through the absolute torture for years. It's a hell of a lot more physiological than it is psychological and that's really difficult to get anyone to understand. I've lived with anxiety (stress) since childhood due to an unsafe living environment and believe me anxiety is a piece of cake compared to this. I'm one of those people that won't refuse psychological treatment because I don't care what you call my symptoms, all I want is relief from them. I do believe, though, that trauma and prolonged stress is more likely to trigger illness but it's very obvious to me that there's some genetic involvement too. I have a sick family. And I believe I'm sicker because of a perfect storm. Getting hospitalized with sepsis in 2011 was definitely my tipping point. Thank you, Dr. Afrin, for sharing your experience and taking the time to advocate for patients essentially all over the world. #drafrinforthewin #neverbetagainstoccam #mcas
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