■The Challenge■

My aim is to donate more than 10 inches of my hair to a charity: Locks of Love

■My Goals■

◇ To raise money through this challenge to a UK charity My New Hair which supports people with medical hair loss and severe burns.

◇To raise awareness of my condition: Cerebrospinal Fluid Hypovolemia (CSFH). 【 脳脊髄液減少症 】This is still a VERY little known illness despite the fact that it can occur to ANYONE from car accidents, child birth, or sometimes even just a simple fall... 私の【JustGiving Japan】ページ

 

■Why I Chose This Charity : My New Hair■

Although I had committed myself to donate my hair for Locks of Love (public non-profit organization in USA where I grew up), I also wanted to help a UK charity as well, since I have been living here in London for nearly a decade now!

 

I found a charity called My New Hair and decided to raise money for them. (Thank goodness they don’t accept hair donations - it would be difficult to divide my hair into two packages!!!)

 

I feel I have an understanding of what severe hair loss might mean to a sufferer. I know myself how hard it can be when it seems like there is no hope. But I can also relate to that wonderful feeling when some care and support can really lift your spirit up and carry you far away with strength you thought you could never have any more.

 

☆ I would be very honoured and very privileged

if I could be in part in any way

of making someone feel that way ☆

 

■About My Condition: Cerebrospinal Fluid Hypovolemia (CSFH)■　

　　病名：【 脳脊髄液減少症 (のうせきずいえき　げんしょうしょう) 】

Since suffering a spinal injury in an accident back in 2003, I have been dealing with many chronic pains (some very extreme) and many other symptoms 24/7 for the past 10 years.

 

Before the accident I used to be very active, and my passions were to play many kinds of sports including Golf, Tennis, Ski and Snowboard, etc from a very young age. I still LOVE following PGA, LPGA, WTA and ATP tours, but unfortunately these couple of years has been extremely hard to even watch them on TV. So you can probably imagine how hard it is for me to suddenly give up my passions only to stay home lying down and dealing with these symptoms every day for such a long period of time…

 

The symptoms of CSFH are due to a leakage of CSF (Cerebrospinal Fluid). As a liquid, CSF is affected by gravity, which means that whenever I sit or stand up, my brain (the cerebellum) is dislocated to a lower position, which rapidly worsens many painful and difficult symptoms.

 

The symptoms I have include migraines and many other types of extreme headaches, very stiff and painful neck and shoulders and many other chronic pains and symptoms which prevents me from sleeping peacefully. Because of the extreme sensitivity to noises, lights, and smell, I need to protect myself with ear plugs, noise cancelling headphones, and sunglasses or eye masks in my daily life. Various movements and vibrations (e.g. sneezing, slight sways in vehicles or wheelchairs, somebody dropping something or sometimes just my own footsteps) would also cause many kinds of shocking pains or collapsing. Extreme dizziness can also make it very tough for me to walk on my own or leave the room to go ANYWHERE even with some help.

 

I know that living with me can be VERY difficult having to be so careful ALL THE TIME, but I am very grateful for my family who not only put up with it, but support me in every way in my daily life. I feel very lucky to have such a loving caring family❤

 

Because of this CSFH condition, I am forced to spend most of my time lying on my back. I am never pain free, but this helps ease some of the symptoms. In fact, this is why even when I feel well enough to be on my computer, as right now, I am still on my back like in my picture. It can be very painful and very difficult to use my brain (e.g. thinking, remembering, concentrating, etc.)

 

2011 began a very hard 18 months for me - I became more weak. Since then, it has become more difficult than ever before to do “normal” things in my daily life. I had also lost my voice (for most of the time) which means no talking to friends on the phone, hardly no emails, and no visiting anywhere, etc. These days, I can only interact and communicate with my friends mostly with ‘Like’ buttons on Facebook from my mobile, but can only stay on it for only such a short period of time because of all the other CSFH symptoms I have.

I even had to give up one of my most pleasurable moments; to relax and enjoy a nice warm bath with aroma candles and healing music that I like. But my family was so supportive of me and respected my challenge that they have generously agreed to support and help me along the way. I still need their help to bathe, wash and dry my hair as well as other daily routines till this day. So I think it is fair to say that my fundraising has become . . . .”My Family’s Challenge!”

 

Over the years I have learnt to appreciate more of the little things in life

and not to take anything for granted ♪

 

 

■About My Challenge■　

Growing my hair this long is my own personal marathon. It is a huge challenge for me, and VERY tough for my neck and body because of all the CSFH symptoms I have from the after effects of a severe whiplash and spinal injury back in 2003. This is why I have kept my hair short for more than seven years since the accident.

But everything changed when I found out that my friend LORI had done something very special☆ I was so touched and so inspired when she donated her hair in 2009 to a US charity called Locks of Love, who use it to create amazing wigs for children suffering from medical hair loss and for burn survivors. The commitment to donate more than 10 inchescan be overwhelming sometimes, but LORI is currently working on for her third donation! AMAZING!!!

I feel this is such an amazing cause that I immediately wanted to join the challenge as well, but had to check and ask myself repeatedly if my body could handle growing hair that long (since 10 inches is the minimum length to donate in order to make the hairpiece). I decided to quietly start my challenge, taking one day at a time, just like how I deal with all the other symptoms everyday...

In 2011, I had a number of setbacks in my recovery from Cerebrospinal Fluid Hypovolemia (CSFH) , which meant I had to cut my hair shorter and restart my challenge. These last few months have not been easy . . . . . but I’m both nervous and excited to say that I am almost ready to make an appointment with the hairdresser, take a deep breath and cut off my long thick locks!!! I would appreciate it very much if you could support me on my challenge♪

 

★ Let's support those affected by

the Earthquake / Tsunami disaster in JAPAN★

 

 

♪ I would like to invite you to sponsor me by donating to either or both of the charities I wish to support

which are both very close to my heart ♡

Your donations will be gratefully received

and will definitely add to my motivation (*^∀')ъ ♪

 

 

 

 

  Here is my other fundraising page for Japanese Earthquake/Tsunami Relief ongoing project

 

 

～日本語の東日本大震災復興支援ページは体調と相談しながら少しずつ作成中～

日本語【JustGiving Japan】ページはこちら 

 

【MAKIKO’s JustGiving Top Page】

 

 

 

■Raising Awareness of Cerebrospinal Fluid Hypovolemia (CSFH)■　

　　　　　病名：【 脳脊髄液（のうせきずいえき）減少症 】

Since suffering a spinal injury in an accident in 2003, I have been dealing with many chronic pains (some very extreme) and many other symptoms 24/7 for the past 10 years.

 

It wasn’t until two years after the accident that I was diagnosed as having developed Cerebrospinal Fluid Hypovolemia (CSFH).

This is still a VERY little known illness despite the fact that it can SUDDENLY occur to ANYONE from car accidents, child birth, or sometimes even just a simple fall... It takes away so many things in your life, and unfortunately can even change your family's life as well.

The 2 years immediately after the accident was tremendously hard journey of not knowing what the problem, looking for answers, going to many different hospitals in different countries, suffering doctor harassments from time to time, disrespected by insurance company, etc. I know how hard these situations can be when you are already suffering from so many physical symptoms.

Studies and statistics show that it is more curable when you are diagnosed and treated PROPERLY in the earlier stages (unlike myself!).

These are some of the biggest reasons why I would like to raise awareness of this Cerebrospinal Fluid Hypovolemia (CSFH)  ：

 

　■ to help those who suffer without proper diagnosis yet

　■ for better understanding of the CSFH patients

　■ to help find the actual cure for the illness itself

 

 

Sometimes I could not help myself to think and wonder 'what if I was diagnosed and treated PROPERLY much more earlier...?!?'but I truly believe everything happens for a reason. I am extremely fortunate to be able to receive treatments regularly that help my condition tremendously. I feel very lucky to have such a loving and caring family❤

I feel very blessed every single day!!!

 

 

♪ Thank you for taking your time to read my story ♪

 

And a big thank you to everyone who has donated so far!!!

Your support is gratefully received

and will definitely add to my motivation (*^∀')ъ

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they will never sell them or send unwanted emails. Once you donate, they will send your money directly to the charity and make sure Gift Aid (and additional 28%) is reclaimed on every eligible donation by a UK taxpayer.

So it is the most efficient way to donate- I raise more, whilst saving time and cutting costs for the charity.

 

I would also like to thank my childhood friend LORI for inspiring me

to do this challenge; donating hair to Locks of Love ('∀^*)-❤

 

 

I would especially want to show my gratitude

to my lovely amazing friends, CAROLYN, RUTH, and MELANIE for

kindly taking their time to help me out in making these pages.

Could not have done this without you all!

Love ❤ you!!! xxx

 

 

view Makiko’s Facebook photos

MAKIKO TAYA

October 2012