Thalassemia Diet

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I bet you’re here because you received a thalassemia diagnosis and you want learn about nutrition and alternative therapies to optimize your health and reduce fatigue.

You also want to stop depending solely on pharmaceuticals and invasive medical procedures to improve your health.

You've researched your most pressing questions online (most likely because you’ve seen your doctor struggle to help you), but you still feel confused and overwhelmed.

The goal of this website is to help you find the answers you're seeking. Answers that are honest, backed by research or expert opinion, and easy to understand.

Eastern medicine and psychotherapeutic techniques are included in my work, because I believe optimal health is found in whole-person healing (i.e., mind, body, and spirit).

I was diagnosed with thalassemia major at the age of six months old. Doctors told my parents that I would die before my thirteenth birthday.

I was diagnosed with thalassemia major at the age of six months old. Doctors told my parents that I would die before my thirteenth birthday.

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My name is Josephine Bila and I am a holistic health coach who was diagnosed with thalassemia major at the age of six months old. 

How am I qualified to help you?

MIND: I earned a Master of Social Work degree from New York University and am licensed to practice in the state of New York.

BODY: I am a certified personal trainer through ACE Fitness. I am also certified in raw vegan culinary arts, trained under Chef Russell James and an ayurvedic cooking student under restaurateur, Chef Divya Atler.

SPIRIT: I am a certified Chinese Medical Qigong Practitioner through Dr. Jerry Alan Johnson’s teachings under Dr. Lisa VanOstrand, a certified Reiki healer trained by Brett Bevell, and certified PureBioenergy Healer trained by Zoran Hochstatter.

As you can see, I'm extremely passionate about exploring health and healing through uncommon modalities.

Sometimes, I experiment on myself.

TL;DR — Josephine’s hemoglobin (Hb) improved and she needed less transfusions when she was on a raw vegan diet. She also improved her bone density by 14% using a low-intensity vibration plate. Intrigued? Read the full story and see Josephine’s actual Hb laboratory data below.

People who live with terminal, rare genetic disorders understand that they're often the first to receive breakthrough medical procedures, live to older ages, and completely confound medical experts.

My diagnosis of beta thalassemia major came at the age of six months old. I've received hundreds of transfusions of red blood cells over the years and am eternally grateful that western medicine has kept me alive and well thus far.

I’m not someone who thinks Dr. Google knows more than my actual doctor. In fact, there was never a time in my life when I didn't follow my doctor's' orders.

However, there have been times when I've felt dissatisfied enough to seek complementary or alternative paths to healing.

“When doctors tell you, ‘I just don't know what to do with you,’ and throw their hands in the air, it's time to seek out your own answers.” - Josephine Bila

Nutrition and exercise became a passion of mine when I was fifteen years old. I was thirty pounds overweight, depressed, and desperate to stop getting bullied by my school peers.

Me looking angry and done with everything.

Me looking angry and done with everything.

The beginning of my wellness journey...

I hit rock bottom and decided to change. I learned how to eat well for weight loss, exercise for muscle mass, and perform self-hypnotism (a.k.a. meditation) using books on the topics. As a kid I had no idea how much influence these subjects would have on my future self.

As I grew older, I studied many different types of science (e.g., biology, genetics, chemistry, etc.). I received my undergraduate degree in psychology and biology, then moved to New York City and got my master's degree in social work.

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My turning point...

I was diagnosed with osteoporosis ten years after graduating from graduate school. This is when doctors began to express confusion about how to treat me.

They didn't know what to do for a young person with such severe bone loss. One doctor recommended I take a pharmaceutical drug called Forteo, which is meant to treat post-menopausal women diagnosed with osteoporosis. I agreed to use it since other thalassemia patients were apparently also taking it.

Believing I was unable to heal any other way, I began using the medicine sometime around 2008. The drug began producing severe negative reactions (i.e., difficulty breathing and walking) after only three doses. Needless to say, I stopped using the drug immediately. What’s more crazy is my doctor wanted me to “just keep trying.” I refused.

At the beginning of 2011, I fractured my elbow in a hard fall. Two surgeries were required to mend my bones together and move my ulnar nerve (which sits over the funny bone) to a new location.

The amount of pain I experienced was excruciating. The injury forced me to spend six months laying on my couch, doing nothing but hang out with my dog, Beans.

Josephine with a left elbow fracture, lounging with her dog, Beans.

Josephine with a left elbow fracture, lounging with her dog, Beans.

Fortunately, I'm an avid learner. During that six month recovery period, I discovered the raw vegan food movement. I became so enthralled by it, I slowly began to change my diet. I was vegan by Christmas of 2011 and raw vegan by January 2012.

Upon getting well, I became certified in raw vegan cuisine preparation in spring of 2012. I also began learning all I could about raw veganism and ayurvedic cooking and followed a fairly strict raw vegan lifestyle.

This included organic, local foods, daily vegetable juicing, eating about 80% raw or lightly warmed foods, dairy-free, gluten-free, coffee/alcohol-free, with 20% brown or wild rice (which goes against raw vegan policy).

Here’s how it affected my hemoglobin:

My average hemoglobin before a raw vegan diet was 9 g/dL over the course of two years, with 10 g/dL being the holy grail for thal major. Approximately 49 transfusions were given over the course of this time.

Notice that my hemoglobin before the diet (in 2009 - 2010) was rarely at 10 grams per deciliter each time I had lab work done. I was also returning for blood about every two weeks, which was common for me back then.

I also experienced frequent sinus infections before being raw vegan and that caused my hemoglobin to fall even lower — below 8 (yikes). The thal police will definitely come after me for that.

As my diet changed, my hemoglobin level began to hang around 10 grams per deciliter, sometimes going over 13 grams per deciliter (which is considered a normal hemoglobin level).

My average hemoglobin during a raw vegan diet was 10 g/dL over the course of two years, with 10 g/dL being the holy grail for thal major. Approximately 38 transfusions were given over the course of this time.

My average hemoglobin during a raw vegan diet was 10 g/dL over the course of two years, with 10 g/dL being the holy grail for thal major. Approximately 38 transfusions were given over the course of this time.

For the first time in my adult life, I was able to skip a transfusion week because my blood count was too high. That had never happened to me before. I was also receiving blood every three weeks, instead of two, and experienced much less sickness and fatigue during this time.

Unfortunately, it’s pretty tough to be a raw vegan if you want to have any sort of social life with non-raw vegans. That’s why I slowly transitioned back to eating small portions of animal products, while still juicing several times per week and eating larger quantities of raw vegetable products than I had in years before my raw vegan discoveries.

My average hemoglobin after beginning to incorporate more animal products was 9.5 g/dL over the course of two years, with 10 g/dL being the holy grail for thal major. Approximately 39 transfusions were given over the course of this time.

You can see my Hb count returning to that high and low fluctuation. I’m easing myself back into the raw vegan lifestyle again now that I’m married and don’t have to worry about socializing. Also, plotting out this data has been eye-opening even for me!

This amazing self-discovery emboldened me to find an answer to my osteoporosis problem.

I was tired of annual tests telling me that my bone density was decreasing each year. I was even more frustrated with doctors suggesting I take pharmaceuticals that might possibly improve my bone density by 2%.

My doctors were unconvincing, primarily because I tried their drug of choice and felt very ill from it. Plus, every patient I knew who was taking these drugs were still getting fractures and complaining about frailty and bone pain.

My research led me to a NASA funded company called Marodyne LiV.

Long story short, when astronauts go into space, they lose bone mass. Marodyne’s scientists discovered a non-invasive way for astronauts to increase their bone density, upon returning to Earth, using a low intensity machine that vibrates when you stand on it.

The machine's low-intensity vibration stimulates the creation of stem cells in the bone, which then generates new living bone cells. This is very different than pharmaceutical drugs that increase bone density by stopping bone resorption, while also reducing new bone cell formation.

The device has been nothing short of a miracle for me. I have been using it for just about three years now and the results speak for themself.

Here's a screenshot of the results from my most recent DEXA scan after two years of vibration plate use:

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Here are the results from the DEXA scan from the year prior, which was the first year I began using the Marodyne LiV plate:

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Yes, my numbers are still "below" normal, but a 14% increase in bone density over the last two years is extremely impressive.

What this showed me (and I hope it shows you) is that there are alternative paths to healing; especially when doctors are at a loss for how to treat you.

It’s important to state that not everyone will have these exact results since each person’s health journey is completely unique. Always seek advice from a licensed medical practitioner before altering or discontinuing any current medications, treatment or care, or starting any diet, exercise or supplementation program, or if you have or suspect you might have a health condition that requires medical attention.

I encourage you to join my tribe of #thalthrivers and become an active participant in our universal quest for positive health transformation.

Send me any questions you might have and I will do my best to answer where I can or retrieve answers directly from experts.

Be sure to share your thoughts in the anonymous research questionnaires I post on my blog. Let’s create a substantial resource for thalassemia patients around the world and remove the information exclusivity that’s so common in the medical arena.

Here’s to optimizing your shen, qi, and jing (a.k.a. mind, body, and energetic essence), so you can live optimally with thalassemia.

Sincerely,

Josephine


NOTE: This blog is meant for educational purposes only. Please do not try to diagnose or treat yourself using it. If you have a medical question or concern, please seek guidance and treatment from your local licensed medical practitioner. Always remember that your medical provder understands your specific health needs, desired outcomes, and contraindications, thus they're able to help you make the most informed decisions for your well-being.

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