In today’s age , with all our technology and tools at our disposal such as the internet and advances in health care I am surprised to be reminded that not everyone understands or knows enough about new born screening and some new parents would rather opt out if it. so as not to have their new infants “poked and prodded”

Being as my life was saved by newborn screening and I understand the importance this shocks and sickens me. Don’t get me wrong. its not the parents fault. It is society.  Even with our advances and our understanding of life and health care we as a hole are failing our future children. This is even more so a crisis for myself as a nurse. It is my job and all nurses job to educate everyone on the importance of new born screening.

I actually recently heard that a maternity nurse didn’t actually want to do the “PKU test” she didn’t think it was necessary unless you had a family history. This is not appropriate and very upsetting for me to hear.

Many new parents don’t even no what PKU is until their child is diagnosed. Let alone if they are a carrier or have a family history.

With out new born screening I would have never been diagnosed. I never would have grown and developed. In fact by the time I was 6 months old , I would be mentally retarded.  A lot of people find that term offending and don’t like to hear me use it. They would prefer I say something like “mentally challenged” however, I feel it needs to be said! That is the reality. This is what we face.

How would you feel if you denied your baby a future and quality of life, by denning a simple blood test they wont ever remember. Yes its hard to watch your baby’s heal be pricked and squeeze for blood and yes they may cry and scream.  But this test is so essential. It also screens for many more things other than PKU.

It was not even until the late 1960s that New born screening became mandatory and was initiated all through out Canada. Anyone born with PKU before this was mentally retarded and usually in a group home or institutionalized.

We are lacking in education and because these diseases are so rare and not enough is known about them in the general public they dont understand. If it was something more common like diabetes, CF, Cancer or anything else that is very much public knowledge than the education would be there already.

I feel like it is my job as an advocate to educate the public, my family and my friends to make the best possible decision and to be informed. To be educated and help provide them with the education and research they need.  I feel its all of our jobs.  Some people may think it is not our job or that is unfair that we always have to be the ones educating the public. We didnt ask for this, it was given to us.   But who better than us?

My parents had no idea what PKU was or new born screening and they didn’t put much thought into it at all until the diagnosis came back.   Maybe if they had of know about it , been educated and aware that PKU existed and other conditions it would have lessened the dreadful feeling they found themselves with, and the fear.

Here are some important facts about Newborn screening:

Newborn screening is a public health program designed to screen infants shortly after birth for a list of conditions that are treatable, but not clinically evident in the newborn period.

Some of the conditions included in newborn screening programs are only detectable after irreversible damage has been done, in some cases sudden death is the first manifestation of the disease.

Screening programs are often run by state or national governing bodies with the goal of screening all infants born in the jurisdiction. The number of diseases screened for is set by each jurisdiction, and can vary greatly.

Most newborn screening tests are done by measuring metabolites and enzyme activity in whole blood samples collected on specialized filter paper

Newborn screening debuted as a public health program in the United States in the early 1960s, and has expanded to countries around the world, with different testing menus in each country.

The first disorder detected by modern newborn screening programs was phenylketonuria, a metabolic condition in which the inability to degrade the essential amino acid phenylalanine can cause irreversible mental retardation unless detected early. With early detection, and dietary management, the negative effects of the disease can be largely eliminated.

Robert Guthrie developed a simple method using a bacterial inhibition assay that could detect high levels of phenylalanine in blood shortly after a baby was born. Guthrie also pioneered the collection of blood on filter paper which could be easily transported, recognizing the need for a simple system if the screening was going to be done on a large scale. Newborn screening around the world is still done using similar filter paper.

Newborn screening has expanded since the introduction of PKU testing in the 1960s, but can vary greatly between countries. In 2011, the United States screened for 54 conditions, Germany for 12, the United Kingdom for 2 (PKU and medium chain acyl-CoA dehydrogenase deficiency (MCADD)), while France and Hong Kong only screened for one condition (PKU and congenital hypothyroidism, respectively).^[19]

The conditions included in newborn screening programs around the world vary greatly, based on the legal requirements for screening programs, prevalence of certain diseases within a population, political pressure, and the availability of resources for both testing and follow-up of identified patients.

Some of the diseases and disorders screened for in new born screening are as follows :

PKU and other amino acid disorders

Fatty Acid Oxidation disorders

Endocrinopathies

haemoglobins

organic academia

Cystic Fibrosis

Urea Cycle Disorders

Maple Syrup Urine Disease

Lysosmal Storage Disorders

Congenital Heart disorders

Sever combined immunodeficiency

Duchenne muscular dystrophy

adrenoleukodystrophy

 

and many others.

 

So Please I bag you, before you worry or want to denie the newborn screening heal poke test, please research it and understand it.   A simple blood test could save your infants life like it saved mine.

This is not like a vaccination, it is proven, it works, it saves lifes and it improves over all quality of life.

Thank you for reading this post.

Amanda

8 years ago today, there was a boy, and there was a  girl. This boy and this girl walked hand in hand across the cross walk on Kelly Road. After spending the day at the park and walking around town. The boy was talking about his family , his brother and his summer plans. The girl asked ” what did you tell your brother about me” The boy,  thought for a moment and said ” the girl that I am seeing, what do you say about me? ” The girl replied the same. The boy turned and asked.. ” So should we make it official then?” he seemed shy and unsure. The Girl smiled and said ” yes I think so”

The days turned in weeks, weeks into months , then months into years. The boy and the girl grew together, sharing their lives, their memories , their happiness and their sadness.  They where the best of friends and fell deeply in love. As they grew to be man and women,  life continued on sweeping them along. Through the ups and the downs of the roller coaster, and around and around on the Merry go round of life,   this women  knew, no matter what life through at them , together they could stand tall and face it all.  Together their hearts beat as one.

The Man  had long ago stolen her heart, with his gentle words and his gentle touch.  He taught her about love , and he taught her about life. With his patience and his support , they made it through many challenges and even more  celebrations.  Their love and their bond never wavering. Grew stronger with each moment and each memory.

This women had never felt anything so sure and so strong.  Never believed such a love could exist.  This Man opened her eyes and her heart.  This man gave this women strength when she was weak, he gave her compassion and he showed her a deep kindness.   He gently guided her from her shell and gave her wings to fly.

This man and this women,  2 souls drawn together, met as boy and girl and together became they so much more.

This Women is me, This Man is Cole.

I am so blessed and so grateful for the Love Cole has shown me this past 8 years, I look forward to our future  and many many more years , with a happiness and a confidence.  I thank god for bringing Cole into my life.  I am not sure what I did to deserve him but I treasure each moment .  Cole is my best friend, my soul mate, my life’s one greatest love.  Happy 8 years Cole.  Here is to many more! Thank you for opening your heart to me, for sharing your life, your family and your soul with me.  I love you more and more every day, to the moon and back , and a million times past heaven.

 

Always yours, your Mandy!

xoox

This week marked 5 years since my life changed.

You see in 2008 I had a floating knee cap, It constantly dislocated. I injured it twice , once in middle school, I tripped over a cord at a school dance. I tore my muscles and dislocated my knee cap, it twisted all the way around to the back and tore my tendons and ligaments. Then In 2006 I injured it working as a cashier at Winners. I had been struggling with it since. In 2008 I had my first surgery for my knee. March 2008 , I was off work on medical leave for 15 weeks.  My recovery was slow , my knee got infected and I could not bend my knee. I had to go back and have my knee bent under sedation to help it move. As as a part of my physio I was suppose to go to physio and start riding my bike again. Though I could not afford physio and my knee was still not bending.

On the day my medical leave was up, I started a new job as a receptionist at a chiropractic office. My knee was stiff but started to bend so I decided to ride my bike to my first day of work.  I still remember my mom came over before my shift was suppose to start and asked me not to ride my bike and to take the bus. She didnt want to worry about me. She said she had a bad feeling. I didnt listen. It was july and it was beautiful sunny day.

I should have listened to my mom, something she still reminds me of every chance she gets.

On my way home from work, I was riding on the galloping goose. A old railroad track trail.  Gravol.  As I approached the end of the trail , it broke over the Sooke Road Highway. I dissmounted my bike and began to walk it down to the cross walk.  Just before the cross walk  there is a store called ” Willow Wind Feed Store” its a tack and farm animal shop. There was a car in the drive way sitting there. I could not see a turn singal on or any sign she was going to move. The driver did not look at me.  After that the details are hazzy. The next thing I remember is I was going down under her car. She had hit me just above my knee at my thigh. The same leg that I had just had the surgery.  She paniced as I fell. I landed half on my bike, and half on the ground with my legs twisted and under her car. She want to back up, I got my legs out just in time. Then I was being pulled out from under the car.

I could not wait bare on my legs. I was shaking and I learnt after I kept repeating “I am fine , I just want to go home.”

I remember calling cole, In a calm voice I told him ” I have just been hit by a car” and then I kinda lost it.  He was at the mall and was coming as soon as he could. He got there just as the ambulance came. I believe at this point I was in shock.

I don’t remember what happened at the hospital. I know that their diagnosis was soft tissue damage. I remember standing up when they told me I could go home and a shot of pain ripped through me and I could barely walk but they still sent me home.

some time later, days or maybe weeks later, I was sitting at my desk and work when all of a sudden I went into spasms and convolutions of pain. It ripped through my back, I could not breathe., I could barely walk or stand. I made it to the back room to be away from customers and crumbled. I remember my boss came, they put me on a table and tried some acupuncture needles, nothing was working and my legs where numb. They called Cole and I left.

I had a ruptured disk. I learnt later, When I landed I shifted my pelvic floor and ruptured my L5 S1 disk. I had static nerve pain and damage.

I was told the pain would never go away, and it has not.  The pain took over my life, it effected every aspect of my life. It held be back from living my life and it effected my relationship with cole, my family and friends.

It effected my work and my ability to hold a job, it effected my moods and my confidence. It caused me to fall in to depression and anxiety. Chronic major depression, anxiety and panic disorder , so I am told.

I wouldn’t leave my house, I couldn’t work, I was dependent on Cole.  The pain was so intense, every day for the moment I woke up and stepped out of bed, to the moment I went to bed and even while I slept.  It kept me awake and made for restless nights.  So to say it changed my life is putting it lightly.

I lived my life day to day in pain, with numbing from the waste down. I let it control my life and lived my life in fear of hurting it worse. I didn’t do anything. I was not active, I did not swim or go for walks or bike rides. I was left out of activities and held myself back from trying anything . I had “fear of movement”

I would try here and there, only making it worse. Id go to the gym for a few months or do something active and then id hurt more and id stop. Starting and stopping over and over again.

Physio sometimes 4 times a week. I wore a back brace all through my LPN course.  I have taken many many many types of pills even narcotics like hydromorphone. Nothing came close to managing the pain. Now I take gabapentin, 2 300 mg tablets twice a day and use tramadol for break through pain.

Tylenol and Advil just don’t cut it.

Then in 2011 I had another accident at work , A medication cart fell over and I caught it. IT felt like some one stabbed me in the back instantly.  a year off work , 10 weeks of physio and massage every day, a graduated return to work program that I could barely get through 4 hours on  , with out driving myself to emergency with spasms ripping through my body.  I was told I should consider giving up nursing. That Id never have a pain free day again. That I should consider doing something else or going on disability.

We then decided to move to kamloops. I went back to work as a nurse. I just could not give up.  I pushed through. I still remeber the first week up here, at my new job. I called cole in tears. He was still in Victoria finalizing things down there. before joining me 2 weeks later.  Cole feared I had done something else, another injury or accident. He said ” what did you do now?” but they where happy tears. I made it through a week of shifts, back to back and was in very little pain. I even had a pain free day! I cried and cried.

over the last year , I have gotten stronger, and I have been improving. Every day is a new day, a fresh start and a chance to start over. I am happier, I am healthier and I am more active. Since those first few pain free days turned into pain free weeks I began to test my new found freedom, I joined the gym, I started swimming regularly again. I went to aqua fit, I made new friends. I went for long walks with my camera and my new friends.  I joined drop in badminton and I tried Zumba. I joined yoga and was going twice a week.

The pain is not all gone, I still wake up and have painful days or painful moments. But compared to a year ago when I could barely put on my own socks, I take each day as a blessing.  But I keep going, and I keep trying. I keep working and I am making up for lost time.

I have a pain managment routine that finally works for me and being active has helped to. The yoga and the swimming loosen up my muscles . I get so stiff and sometimes it feels like my back muscles are trying to suffocate my spin. I get all twisted up and my muscles feel like there ripping and tearing. Or my legs are more numb and contracted.  So I have learnt by swimming, walking, hiking, biking and yoga I can keep them loosen up and I can do more things. I feel like I have so much catching up to do! So many things I missed out on!

I love sports! I love hiking, I love being out doors, I feel great after a good swim or walk. I am just starting to cycle again , i am up to 30 mins. I love yoga to. Its been great for my body and moving slowly, stretching each and every muscle. Its intense but it sets my day and my mood.

Its been a bit tough since starting my night line in march to continue to be active. There was the hole adjustment period and changing my sleep schedule and daily life. So I have not been as active since April and man do  I feel it!!

I can tell now. I can hear my body and its telling me to get back at it! Sometimes its hard to be active, I lack motivation, i hate going alone and sometimes ‘im lazy, or to tired. Then my body pays the price.

This week I went for a short Hike with cole and have gone swimming 3 times. It has really made a differnace. My legs where so sore , they felt like my thighs and calves where ripping apart. They where so tight and hard as rock. My massage therapist said they felt like hers does after 4 back to back hockey games.

The nerves where firing alot and lots of numbing. stiff neck , headaches and very tight and sore low back. Poor range of motion. Already I can feel it getting better.

I have learnt alot about myself, my body and my health. Its a journey and its never ending. I am more positive now and I have hope   that one day I will realize that I have not felt pain a very long time. I want to forget what its like to have pain every single day!

I am 27 years old and my body feels 80 some days!

I decided to share this story with you today , to recognize my milestone, to recognize my journey and to mark the 5 years since my life changed. I decided to take my life back and I work at it every day.  This is something I live with , its a part of me just like my PKU, it impacts my life but it dosent have to control my life!

 

 

 

 

 

 

 

I have a feeling this blog post may push a few buttons but I need to get something off my chest!

Not everything is because of PKU!!

I know right? To think! What could I possibly mean? well let me elaborate. I am so tired of reading about how everything is because you have PKU.  When you go to a new doctor, or go to the clinic even for a cold or some sort of pain, god for bid you get admitted to the ER and everyone panics because you have PKU. Then they spend hours wasting time making sure its not related to your PKU, when they could have just asked you.  Honestly, I know more about my PKU then most doctors around here. But a doctor will never admit that. They have to know everything, they cant ask a patient for help, even when I have lived with it all my life, and they have never heard  of it.

That is just one example from my own life, but the cause behind this post today is from my annoyance with the adults who blame everything in their life because they have PKU.  Failed marriages, loss of a job, headaches, unemployment, to many bills, bad relationships, arguments, and their attitude are all because they have PKU. They blame everyone else , from there parents, to how they are raised, their families, Their employers an even their doctors and PKU clinic staff.  I understand the bitterness and hard feelings. It has not always been as it is now , and many people feel like they had to pay that price.  But we cannot just sit around and point fingers. We have to be the change we want to see.  If we want something to change then we need to stand up and make it happen and just not sit around and point fingers.

I know its hard when you are effected by high levels, and you cannot always see things they way other people can.  I get so frustrated though when I am told I don’t understand or I don’t get it. That I have it easier and the kids today have it easier.  I am 27 years old now, and I have had my struggles. I have been knocked down to the point of crying on the floor of my apartment while cole holds me and rocks me in his arms, with high levels and side effects.  I have not let it get the best of me and I do not blame it on being born with PKU. I may have resented my PKU as a teenager, but why? its apart of me.  It helps make me who I am and I consider myself lucky, It could always be worse. I am blessed to have not been born with something worse. Id rather have PKU than have something like CF where the expected outcome is grim.  Id rather have PKU and control my diet and my PHE than have something fatal like CF or cancer. At least with PKU I can still live  a fairly normal life, I am not mentally retarded and I have a good quality of life.

I recognize its not with out the struggles and the ups and downs, it could be better but it could be worse. I choose to strive to do my best to make it better.

Dont get me wrong, every day is different just like everyone’s perspective. But I do not see the point on letting it hold me back. I am not with out my “I hate PKU ” moments.

I know its really hard for those adults who where taken off diet when they where young. Its not because they where “guinea pigs” it was not because there doctors wanted to make them suffer, thats the way it was. They thought they knew best, that was the treatment of the time.  Its sad and I am grateful for those Pioneer PKU adults who paved they way for research and  new treatments.  Everyone did what they thought was best, its in the past and its time to move forward.  We are so lucky to have the treatments and the research we have now.  Instead of being bitter and resentful, indulge in treatments today, try new foods and formula. BE thankful we have come as far as we have and enjoy the standards we are lucky to have now.  Even with all our new products , new formula, new treatments like KUVAN and Peg pal , there are a lot of places and people dont have the same aces. So let us celebrate and be grateful and recognize how blessed we are. Lets all help each other and continue to push PKU forward so we all can have the same acess and benifits.

That however is my 2 cents. My rant for today is over.

Thanks for listening.

 

 

Sometimes its the little things, things that most people would take for granted that impact our lives. My “little” thing this morning is a first time,  new experience. For the first time ever, I have all these low protein products that I have never had tried or aces to, and today is my day off after a rotation of night shifts and I woke up early with a plan in mind!

Today I tried my hand at making my very first low protein omelet, sausage and bagel. I used the PKU perspectives Egg mixture for the omelet, and I added white onion, green onion, red peppers, mushrooms and a little dayiah cheese.  For the sausage I used the pku perspectives mushroom burger mix and formed it into a rough sausage shape. They may not look pretty but It tasted great! The bagels are the bigger bagels, onion flavor from Cambrooke foods, topped with a little cinnamon spread.

It is moments like this that I truly appreciate how far the treatment of PKU has come, and how products like these really impact my life. Where most people take for granted what they eat every day for food , specially breakfast. Alot of people don’t even eat breakfast. In fact I didn’t really either for a few years.

These new products and new inventions help give me more variety and opportunities that I never could have drempt possibly just a few handful of years ago. I feel so blessed.  My breakfast options have always been very limited to sugary kid cereals that are lower in protein such as Froot loops, captin crunch, and corn pops and bread. It has only been for a handful of years that I have begun making my own low protein bread.   I have always found breakfast the most stressful time of day for myself, with limited options . I would easily get sick of eating the same thing day in and day out for breakfast.

I didn’t even no about the egg mix until the pku conference in Vancouver and the mushroom burger mix maybe a month ago when i first tired it in my spaghetti. I have been using it as a low protein ground meat for my spaghetti and just loved it. Last night I thought up the idea to form it into sausages after seeing some dishes my friend Brienna has made for her PKU son Hayden.

My kitchen is a mess, and there are dishes every where but , I am so happy , and full!

This was a great way to start my morning , and I am full of hope for the future and how I manage my PKU and my diet, and I am so thankful to all the low protein companies and their hard work making our life a little bit easier and a little bit more “normal”

 

 

I am currently reading ” My PKU life” By fellow PKU Adult Carrie Hall. According to my tablet I am only 9% into her story. I am just starting the chapter on her highschool years.  I am already so in love with this book, I am so grateful that Carrie decided to share her story and to write this book. Its like shes speaking to you, having a conversation and casually telling you about her life. They way she writes and how she describes her memories. I listen to her words and I think oh my god! this is so similar to my life. SO many same emotions and experiences. How can any one out there feel the same as me and have gone through a lot of the same things. I read her words and I feel so connected to her. Its a powerful read and I highly recommend it. It would be very useful to anyone in the PKU community but I speaks to us adults , to our generation , to our age group , on a hole different level.

I wont give away to much , but I will certainly be blogging about it when I finish. So be sure to check back, or better yet! download it! both of her books are now available as E-Books. On iphone and android. They are on kindle so you can download the kindle app in both play stores , and buy the books from amazon.com.

Carrie, if you are reading this, thank you! I cant wait to read it all , and your second book too!

 

 

Well to my utter shock and dismay, I have not being doing as well as I thought I was with my intake. I have been using my “my pku diet” app for 2 weeks today. I have done mostly ok with it, still entering alot of information manually. I missed 2 days out of the 14. I have been eating alot of my own low protein baking but to my horror, they where not as low as I thought it was. 

Let me explain. 

I began my efforts to get back on track June 1st with a blood test on June 2nd to see where I was at. That result came back in at 8.0 I was pleasantly surprised , I was expecting higher. 

So tonight, I  just generated a report of my intake for the past 2 weeks and this is what the graph has informed me of : 

June 1st : 896.2 mg phe , 2402 calories 

June 2nd : 698.5 mg phe / 2289 calories

June 3rd : 751 mg phe / 2349.9 calories

June 4th : 486 mg phe / 2683 calories

June 5th : 321.3 mg phe / 1678 calories

June 6th : 314.5 mg phe / 2058 calories

June 7th : I forgot to add in my dinner. 

June 8th : completley forgot this day. 

June 9th : 509 mg phe / 2272 calories

June 10th : 414 mg phe / 1531 calories

June 11th : 798 mg phe / 3090 calories

June 12th : 625 mg phe / 2735 calories

June 13th : 568 mg phe / 2534 calories

 

I am just in total shock. With intake values like that you would think I am eating really high foods . The only thing I have been really eating are my low protein pizza pops. but multiple pizza pops. And then for dinner low protein pasta salad. 

all thought I am so dissapointed and ashamed of myself , doing these records shows me where I am going wrong and where to make changes to get back on track. One thing is for sure. no more multiple pizza pops. 

My goal going forward is 350 mg phe / and 1500-1700 calories. AS you can see, this is going to be a huge challange for me to control my portion sizes, to weigh and to track consistently. I am going to have to suck it up and do the hard work of prepping and planning and having more variety. I will be relying heavily on new recipes and increasing my fruits and veggies. 

I have never been able to stick to this long enough so all the encouragement and support is appreciated. 

Every day is a fresh start right ? a chance to start again and thats what I am looking at today as. Taking it one meal at a time from here on out! 

 

Because I work all nights I was sleeping all day today . When I awoke this afternoon , I was overwhelmed by the responses I have been receiving from my post last night regarding my experiences with high levels. Thank you all so much for your kind words and sharing your stories with me.  It is so nice to read all your stories . It still amazes me how many of us gone through similar experiences.

Last Night I was so tired and there was so much more I wanted to share and write about. All of your responses have made me think back and reflect over what I did to my body.  I am so happy now that I know the differences  I use to tell people when they asked me what it was like , that I was walking around in the dark fog and then one day someone just came along and switched on the light. I felt lost. It was so overwhelming.  I spent years of my life walking around in this darkness with heightened emotions but most of all so unhappy and hating myself. I never want to be that person again.

I fought with my family, my mom and dad, and my siblings. I back talked and argued and was angry all the time. I created alot of problems for my family and got myself in to trouble a lot. I was angry all the time. Rageful actually.  I was not destructive or anything. I didn’t drink or do drugs But however I did skip school and lie . I hardly ever went to classes. I was a horrible student I failed alot and eventually dropped out in my second year of grade 12 of my day time courses and came back once  week to evening classes to finish out the year. I was always in some sort of drama and crying or caught up in fights with my peers. I was bullied so much and abused I hated being in school and I hated being at home too. I was misrible. I really dont no what would have happened to me if I had not met cole and got away from the toxic people in my life.  Cole was the one who turned the lights on in my world.  He taught himself all about my PKU, baked my low protein foods with me and bought me my foods. He cooked and taught his family about my diet and made sure i never felt left out.

Cole inspired me and begun to make changes and care about my health and my body.  I got myself all those 19 pills , got my levels under control and eventually year by year I stopped having side effects and my mind became clearer. I still struggled to hold a job and stay focused , and my attention span and cognitive functioning was tested on a regular basis. But eventually I was able to over come it all and be who I am today. I am proud of who I am , I wish I didnt have to go through everything that I went through to get where I am but I am happy with me now.   of course I still want to loose weight and get my body back, and to live pain free, more active and healthy life style. I am still a very picky eater and I do not eat enough fruits and vegetables  So my new goals are to be more active, to eat more oganic , no GMOS, grow my own food, and more variety.

 

I am focusing on my brain and my health and protecting it. I know what its like to be sick and I dont want to go back to that or be that person any more damage. I want a future , I want to keep my brain healthy so I can be the best I can be but also so I can continue to be a nurse and pay it forward to my residents and patients.  Also so I can be a good friend, girl friend ( hopefully wife one day ) a  mother one day, a good daughter, sister , nurse, granddaughter, cousin, and more.

 

So I thank you for reading my story and for sharing your stories with me. They are inspiring and makes me so proud of our community and the strengths PKU has shown us we have inside ourselves.  I am who I am because of my PKU, it is not who I am , but it helped make me who I am. . I do not let it control me and I do not blame it for the troubles I have gone through. I own my mistakes and embrace my PKU and know for me , its my choice and my lifestyle.

live long and live healthy!

Thanks for reading!

Your PKU Friend Amanda.