The change! Part 1

Its been four and half months since I had my son. Its been a very rocky road since i left the hospital. Emotionally/ thoughts, and Pku diet. They say that it takes a whole year of postartum to be able to get your levels in range. Because of all the changes your body had. But no one ever really tells you the REAL struggle... Staying on diet! As you know i take kuvan and have been for as long as I can remember. Which worked for me at one point. But sometimes i wonder if my body is way to immune to the drug that it wont work anymore? Lets be honest docoters or reps from biomarin will not tell you the honest truth. Nor would they agree with you. But i feel like the real people that would have that answer is people like us that have been taking it and the results from it. But it comes to a point which it has for me that its time for a change! Once I was reintroduced to what it feels like to feel good and be the best version of your self. Thats all I want now. Which is what I want more then anything at the moment. I hate the feeling of not meeting my full potential as a mom, a wife, and a teacher. And id do anything to change that. Which made me decide tjat it was time to give palynizq a try. Hopefully this time around it Actucally happens. So this thursday is my clinic app and hopefully they will set me up for my first injection date.  

In the mean time I'll keep you posted 😘

Kuvan or palynziq?

Monday will mark four months since I had my son. Its been a real roller coster with my phe levels and sadly the lowest they were was when I was in labor with Bentley. Which was a 3.  But they quickly shot up within 24 hours of not being able to solid foods and the drs or nurses didnt seem to really understand pku. Besides the fact they tried to googled it. Which was pretty obvious because the dietation came in with a packet of information about pku. But thats what happens when you have a rare disease! Lately I have felt that kuvan has not benefit me in the same way that it had during my pregnancy. I was never the fortune type that was able to eat more phe because it works so well. Although I always hope that taking kuvan would drop my phe levels low and in a good range to be able to eat more forumla. But unforuntatly thats never happened for me. The question is why?? Ive been taking it so long. Is my body so use to the drug it wont work anymore? Is the dosage not enough for it to work? Or is it just in the plans anymore? So many questions swirl in my head. And I wish I could answer it on my own. Sadly im still very confused. I know that my husband and I are not done having children yet. Which is big part of the decision in this. But there also alot of side effects to take in consideration. It would be nice to try something new like palynziq. But would my body react well to it. And the only way to doing that is by trying it. Hopefully I figure out whats best for me and god leads me in the right direction soon ❤

Pku postpartum 3 months later

Its been three months since my baby was born. To be honest i miss my phe levels being low and feeling good despite being pregnant. Since i had my c section and wasnt aloud to eat for 48 hours my levels began to rise. And all i could think was here we go again. Another battle between phe and being true to your body and levels. Its not easy after being so good with your phe levels for so long. But you got remember whats important

Dealing with beginning of cold and flu season

Most people dont think pku isnt effected when you get sick.  It doesnt matter what type of sickness. Unforuntely pku  does get effected wether you have fever or you threw up. Your phe levels go up. So if you dont already feel like crap well pku makes sure you feel that way! The only way to get better is lots of fluids and rest. And maybe a visit to the dr. And whatever you do drink your forumla it will help you recover ❤

Kuvan

There seems to be more and more treatment options every year. Wether they are studying it. Or fda approved. I just happened to choose kuvan. Which has been around for a good solid ten years. And ive been taking it since it first was approved. Of course I was a responder! I was really nervous to even try it. But im glad I did. Unforuntley kuvan works ok for me and not like the others. Some people have a drastic change in there phe intake goal. And then there are people like me who it kinda works for! If you struggle with high levels I would reccomend kuvan! 

Keeping track of phe.

Ive always had troubles keeping track of phe. I ether forget or I just get frustrated by math. And wondering if im figuring out right! Until I had my clinic introduce to me the how much phe online website that helps me keep track. And I absolutely love it and would recommend it to anyone. And lets be honest its hard to keep track of everything you eat. But thats just how the pku life style is! But being a new mom and having the mind set of putting your family first. You tend to forget to do it. And thats what I currently struggle with. But its all about taking one step at a time!  

Be your own advocate

Has anyone ever gave you the advice to be your own advocate? Well I suggest you take the advice! In a world with little knowledge with rare dieases its your job to educate others. Having a rare diease like my self, i nor should you feel ashame or feel sorry for your self. Its not life sentennce its just a life style. A way of living just to be healthy and feel good. Why not advocate for you self and educate the world. Be proud and embrace being different 💕

Saving new born screening

click to save new born screening ❤

New born screening its so important. Why is it important im sure your wondering! 

Heres why it is... 

New born screening tests for multiple different things as soon as a baby is born. It tests for rare dieases like pku or hearing. Its a test to check that every thing is ok with your baby. How ever if its not done in a timely matter then there could be consequences depending what the baby has. With out new born screening being provided in all 50 states the chances of effecting new borns are greater or may even cost a life. The link at the begining of the page is to send a letter to the state senator to understand the importance and will stand behind the bill. If we all get involved and have them see the importance of the new born screening. Then they would see why they need to pass this bill. Lets save more lives and educate more ❤

The struggles with high levels before and after pregnancy

Anyone with pku can agree with me that phe levels are fustrading, whether there high or low! Most teens and adults are the two groups that struggle the most with phe levels. Why you may ask? Because we all can agree that we want to be socially acceptable and to "fit in" some dont really want to accept the fact that there different. But I learned to accept being different. I'm greatful that i am healthy. I have to admit I wasnt always an angel when it came to my pku diet. Ive tried things that I shouldnt be eating at all. But i can say one thing that I never was brave enough to try meat. I always looked at like I was a vegetarian. But having temptation to try foods that arent pku friendly is always there. Thats where the self control plays the biggest part. Before i was pregnant I wasnt on diet. But it wasnt til I found out i was when I decided to go back on diet for the safety of my baby. But since I had the baby its alot harder to stay on diet. Because I always make sure my son is tooken care of. Before I intend my needs. And alot of times you get hungry and you dont think about counting phe you just eat it. What can i say? Guilty as charged.. But I also had the since of victory after i had my son. Seeing how handsome and healthy he is. It makes you want to treat your self. And lets just say if you do it alot you always fall back into the same pattern. For those that are reading this and there completely lost in what the paragraph is talking about. Let me inform you! So when a pku individual eats to much phe it gets trapped in the blood stream and makes its way up to the brain. And it hurts the brain. Some side effects occur like mood swings, depression, anxiety, troubles focusing, making decisons, and lowers your iq score. And it is possbile to have a stroke or seazure which isnt too common. But when my levels are high I can tell. Not feeling well because of it should be a motivation to try harder i know it is for me. 

Motherhood vs pku

Pku requires alot of time and dedication to stay healthy! But what if you feel like you dont have much time for that? Sadly most moms wether they are new or have several children can all agree that time is precious thing to have when you have it. As a new mom I can defiently say that it is easy to put your self in last place or even forget your needs. Like pku. Its one thing to forget your kuvan one night. You think it's no big deal. But it can become a really bad habit. I can definely admit that I am guilty of that. But finding the perfect balance is hard but some times you have to take it one day at a time ❤ 

Depression.. Pku related or postpartum?

Let's talk about the elephant that's in the room. A lot of people frown upon sharing real emotions so if we're being honest here I have dealt with depression for years. But with PKU it's hard to tell if it's genetically or just PKU related. Some people might wonder how PKU plays a role in it. But it can if your levels are not in control. It can bring you into a dark place and bring out the worst in you. It can make you look in a mirror and not like the person that you are. Depression is not something to joke with. It brings you into a dark hole and all you want to do is see your way out. But some people are so scared to speak up when they know they need someone to talk to or at least need some type of help. For years I never did but after I had my son my depression came back and it came back with a punch. I realize that the depression wasn't just postpartum it was also PKU related. Not a whole lot of people really understand having both at the same time until they walk into your shoes but in the PKU Community I'm sure anyone could sympathize. But having depression doesn't mean you're trying to seek attention I just means that you want to be happy you want the darkness to go away. But I didn't just have depression I had really bad anxiety to. It's hard to admit when you're not completely okay cuz you don't ever want anybody to look at you like you're crazy. But my advice to anyone that ever feels that way is to speak up and get help. I'm proud to say that I did and then I feel a whole lot better I've seen what personally could happen if I never seek help and I love my family so much that I would not want him to put through so much hurt that I experienced when I was younger. But anyone that has PKU here is my absolute advice to you if you are a teenager, whatever you do don't ever try anything new that you're not supposed to or even fall off diet that's where everything goes wrong and then the more you do it the more it doesn't feel like you have a conscious anymore about what you eat. To adults I completely sympathize on how hard it is to stay on diet on at all times. Between Financial burdens and finding the time between having a full-time job or raising a family. It's not easy life is a lot busier than what it used to be but I can also say that if you work real hard at your diet you'll feel more proud of yourself I know I did.  and I'm going to be honest I am no saint and I meant the I've struggled since my son has been born but it's a struggle that I'm willing to face and willing to find a way to make everything work. so if anything I hope when you read this you take some advice from it

Motherhood and pku part 1

Its been 8 weeks since Bentley was born. Some things about being a mom i kinda got use to it. But I know I still have a lot to learn since I'm a new mom. Luckily my son doesnt have pku. Although i have to admit its hard to keep up with your low protein diet and taking care of your new born needs. But I know they always say make sure you take care of your self so you can take care of the baby. Which I'm still working on. But I know I can do it. ❤

Pku and health insurance

Everyone in the pku community can all agree that dealing with insurance is annoying. For people like us or anyone in the rare dieases comunity can relate to the fustrations of insurance. Alot of insurances will not cover rare dieases like pku. The reason why you might ask? Its because in there eyes they dont see the reason to cover it if theres not enough people in the world that have it. Which if you ask me is really stupid and defeats the whole purpose of being RARE. 

But if its one thing i learned since I turned 18 and had to take over insurance responseabilties is dont back down. 

What i mean by that is... Dont let insurances bully you or tell you no. As long as you have a clinic behind you ready to help you. It will help you a whole lot. 

What ever the case may be dont take no for an answer and be an advocate for your self or your child because no one will truly fight for what you need until you put your self our there and have your clinic back you up! 

New born screening awarness

If your pregnant and have pku this is definitely something you may want to consider reading... 

As you know September is new born screening awareness month. For those that are first time moms may have alot of questions about it. I did! I realized that not Every state is the same on the time line of when you will get the results. 

When my son was born he was in the nicu for troubles breathing at birth. At first I was asking all the nurses that took care of Bentley if they know how long it would take for the results and if they done it already. Needless to say i had to stay on top of them about doing the test on my son. Which i didnt think I had to do. But im so thankful he doesnt have pku other wise I think he would of been detected alot later then he should. Which is a scary thought. My advice to any soon the be pku moms make sure you stay on them about the new born screening. They dont truly understand how crucial it is. Because they don't understand pku

The begining of motherhood and pku

Its been a month since Bentley has been born. Safe to say that I'm more comfortable being a new mom then in the beginning. Although its been rough to juggle pku and taking care of a new born.  No one really prepares you for that part. Being a new mom ive learned to be selfless and to put others before me. Alot of the time i do that and I forget my needs to my pku diet. Its been fustrading trying to find the right routine to follow that works best. But im confident that i would find a way. 

Pku and postartum depression

Clinics and pku camps talk about materinal pku. But never talk about postartum the after math of birth. I always thought it would be so much easier after birth. And yet it's not. Its just as hard. But the struggles are alot different then pregnancy! Let me guess as your reading this you wonder how is it hard? Well let me share with you what makes it hard.... 

Having pku and taking care of a new born who doesn't have pku is hard. Because I was so use to the routine I had before when I was pregnant. Because that was focus. Now since the baby is here it's so easy to loose your self. Because you always worry about the baby! Which has been a struggle that I'm willing to over come. I realize my health is just as important. If my levels arent good and my health isn't. It would be harder to take care of my son. Its a motivation that makes me want to try harder with my diet. Alot of woman are afaird to come out and say they need help when they don't feel ok. Postartum depression almost seems frowned upon in society. But reality is.... Its super common in woman after birth. I'm not ashamed to say that I was diagnosed with it. Of course I do wish I didn't have it. But I spoke up and recieved help for it. Its hard to have that and pku because the side effects are similar! But I love my family enough to seek help and conquer the struggles. if you don't receive help it would be a lot harder in the long run I totally recommend any woman that is dealing with it should seek help. it's okay every now and then to say that you're not okay and that you need help. I do believe it takes a strong person to recognize when you need help! 

Pku postartum

After being in the hospital for five days. Safe to say Bentley doesn't have pku. Which is kinda a relief even though; it wasn't that big of a deal. I had to get an emergency C-section and, once he was born I wasn't able to really bond with him. because he start to have breathing problems. so they took him to the intensive Care unit, and I had no idea! so I woke up I had bentleys Dr come in and explain the situation. At first I beat myself up thinking my pku was responsible for this. because Its so easy just to blame myself! but then I was reminded by my husband that my levels were great up until that moment so It couldnt of been that. For three days Bentley stayed in intensive care. he was doing better every single day and surprising everybody with how strong he is!  I'm so happy that he's doing a lot better!! but at the time I was thinking of breastfeeding, little did I know you have to breastfeed about eight times a day and pump throughout the day. which is a lot to do especially for a woman with PKU. the biggest question was if Bentley had PKU!? that would determine whether I would or not but, since I got the test results he does not have it.  I still decide that the best thing for me to do was not to breastfeed since it's so involved and PKU is still involved. The best advice I was given when I was pregnant was make sure you take care of you so you can take of your family.  so I decided that it was best for me not breast feed. But to find a forumla that was the closest to breast forumla. Which at first I already felt like I was failing as a mom to make the decision I did. But then I realized that I'm not. That I try to be the best for Bentley. 

Taking Bentley home from the hospital was an emotional moment for both my husband and I. Because we just didn't know what would happen. But we're so happy things got better. I honestly thought pregnancy was hard and after wards won't be as hard. But I was wrong. Its hard. Especially if you just wanna continue good habits. Counting every thing you eat. Taking your protein drinks and taking your kuvan. Its overwhelming adding a new born into the picture. I just have to keep reminding my self take a deep breath it's a life style change!  

Pku around the world.

Its amazing to connect with people all over the world that have pku. It doesn't matter how old or what back ground you come from. Nine times out ten you always have an instant connection thanks to pku! I realize that even though we all live on different places we do have alot in common like some of the struggles we face. But I also realize that every country has there own issues with pku. Advocating is so important no matter where you are. Yeah we may be rare but it doesn't mean we aren't out there. It doesn't mean we need to be ingored of our existence. I encourage any one at any age or any where to raise awareness of pku 💙

Phe goals!

Every one with pku that is on the low protein diet has a phe goal/ tolerance! What is a phe goal? Its an amount that a pku person can consume a day. That is safe for the body to break down. And it won't be so much phe to hurt the brain! A dietation determines how much phe your body can have a day! Recently my tolerance changed to 900mg based off of my last blood spot results. I have to admit it's the highest I ever had. But that's because I'm in my third trimester. And luckily the baby has no problem helping me break down my protein. The biggest question is will he have pku? In my gut I have a feeling he won't. Because my phe intake had went up dramatically! And the lowest I ever had was 200mg a day. To people with out pku don't really understand why it's a big deal. But for anyone with pku it is! The more phe you can have the more easier life can be! And the options of different foods become available! Alot of people ask me all the time is will you ever grow out of it the answer is no. Its for life! Its not even remotely possible to grow out of it. The only way to get rid of is a cure. Which there's not one. There are just treatments to help make life alittle easier. But it's not the end of the world it's just a lifestyle that I've always had! 

Pku pregnancy (36 weeks!)

Tuesday was my high risk appointment. I'm so use to jumping back and fourth between obgyns. I was informed that it was my last visit that day. It blew my mind out of the water that we're almost to the finish line. That bentely will be here soon. The Dr had also mention he's currently weighing in at 5.4 pounds. Which is still normal. But the biggest question that everyone seems to wonder about is... Does he have pku? In my gut I have a feeling he doesn't comparing to my phe tolerance and levels have been. But wether he does or not my husband and I love him just the same! I'm not nervous about the possibility. Becaue I know that everything will be alright. But the Dr did inform me that it would take up to 24 to 48 hours just for the pku new born screening results would come back! But I'm ready for all the outcomes. The good, the bad,the scairy, and the ugly! Cause I know I'm strong enough to handle it. 💙

Having a high phe tolerance

I never had 900mg in my life. I always thought the more phe you have the easier life is for you! Its true to a certain extent. All my life I'm so use to eating low protein foods. And always use to running out of phe towards the end of the day or not being able to eat certain things like peanut butter. But since I'm in my third trimester my phe intake had went completely up! I thought to my self that I should enjoy the amount I'm aloud to have now because after bentely is born I go right back to a lower tolerance. Its almost like knowing what it's like having a liver that actually works. But I have to admit. Its been hard trying to eat 900mg. it's a learning process. And it's nice seeing the foods that are higher that I can finally have. But even though it won't be like this forever.  I'm ok with that. Because I know I'm already have conqured maternal pku. The one challenge every woman with pku faces. So any other struggles with pku that comes my way seem so minor to me! Because I know that I can handle it. 😀

Thoughts on Gene therapy

They say that Gene therapy could be the possible cure for pku.  It sounds like amazing idea. There are alot of risks. To the pku community minus all the sciencetist. Regular individuals like you and me. Don't know a whole lot about it. Alot of questions I wonder about is... What are the risks? They say it's a one time fix... But is that really the case? How would it work? Could your body reject over time? Is it even safe to get pregnant after taking it? So many unanswered questions. Makes me worried to even be willing to try it. But in cases like these with very little info to go off. You gotta keep your mind wide open. I really hope they find a cure some day. ❤️

Having a relationship while having pku

Having pku is apart of who you are. Its not something to be ashamed of. But you want to find that someone that understands your needs and your health. Alot of people like to judge. But it shouldnt be a subject you should avoid! I would tell the person your with when you feel comfortable. Its not something to hide forever. Believe me I have been in a relationship where the guy didn't understand pku. He actually thought I made it up! Even tho I had proved over and over that I did. I realized that he will never get it. And that is something that I find important in a relationship. The next time you go out on a date or get into a relationship. Find the time to tell that someone about pku! And remember don't be ashamed! Its just a life style not a life sentence. 

What is phe?

The one thing about pku that people don't understand much is what phe is. Phe is the type of protein we have to calculate. Phe is short for phenylanie. If someone with pku has to much phe during the day it raises there blood levels. On adverage someone with pku has to keep there phe levels (which is detected by a blood test) between 2 and 6. That is the healthy range to be in. It helps us function alot better. But higher then a 6 can be toxic to the brain. Which creates brain damage over course of time. The lower your levels are the more your taking care of your brain! When someone with pku has high levels especially for a long time. It will effect you long term. Some of the side effects are head aches, mood swings, depression, axienty, having troubles pay attention at school or work, troubles with relationships with others, socially akward. Some people don't experience everything. But for me. I've experienced most of these. Especially being off diet for so long! But everyone is different and so is there phe tolerance. Phe tolerance is the amount your body can break down a day. A metabolic dietation lets you know judging on your blood tests how much you can eat. Before I was pregnant I was at 345 mg of phe a day. Which is not that much. But now being 8 months pregnant I'm at 800mg. Which is a huge jump! I know you probably wonder why? Well because being pregnant the baby is taking more nutrient than I am of what ever I consume. He basically acts like the liver I never had. Once I got my phe levels lower he Continues to keep my levels low. After having the baby most likely I will have to cut my phe tolerance in half. Which will be hard. But I'm up for the challenge. 

Traveling with pku!

Traveling while having pku is kinda hard. It's all about planning each meal for the day. Making sure you stay within your phe goal range. I recently just got back from my trip from Gatlinburg. It wasn't just a regular vacataion. It was a trip that changed both my now husband and I. Because we had gotten married! Any ways packing for the trip was a challenge when it came to pku. I made sure I definitely had my forumla and my kuvan that lasted the three days we were gone! I also packed extra forumla just in case I needed it. Because when I ever I feel slightly sick I always turn to forumla to drink. Alot of the times it helps me feel better. As far as meals goes. I tried to figure out each day phe intake wise. Since I'm about eight months pregnant. I had a great amount of phe tolerance (800mg). Which wasn't to hard to plan meals. It's just making sure I had enough thru out the day was the hard part. During the trip I made sure to calculate everything I ate. I even brought my scale with me. As much as attention I got in public. I didn't care. I knew that it was better to use it.  Then let my my self and the baby have too much phe. Some mornings I made sure I had fruit. To help save phe to eat out later. The only foods around us that I was able to eat were potatoes and salads. Which I stuck to only that. I discovered the best place for salads is subway! They let you build your own salad. And everything is fresh. It's a good size salad. I would seriously reccomend it! If you have lower phe tolerance while traveling I reccomend to bring your own low protein food and make sure you eat plently of salads if you go out! 
But dont ever let pku stop you from traveling or living life. Remember it's a life style not a life sentence. I know sometimes it feels like its true. May the odds ever be in your favor if you do take vacation! 

The struggles/rewards of pku

Pku has always been a challenge for me. As an adult it seem more like a war then just a challenge. Doctors who work in the profession can definitely say that teens and adults are the ones that struggle the most with their pku on average. Which is true. As a child your parents are always in your corner and watching everything you do and they always advocate for you. But everything changes when you become a teen. You are more exposed to social events that exposed you to different foods that make tempting to try. As a teen All you care about is fitting in or not wanting people to interrogate you about having pku. Because you may not even feel comfortable in your own skin. That's where the self control is lost. And you attempt to try things that are an absolute no to pku diet. But as an adult it doesn't get easier. You even more busier with your own life now then ever. Wether it's working a full time job or a full time student. Sometimes you may feel like you can't catch your breath! It's easy to forget your forumla or to count how much phe you had consumed for the day. The pku diet requires time and effort. The more your motivated to stay healthy the better. But I can definitely admit that I went off diet from the time I was a teen to the age of 23. I really encourage adults to try to stay on diet. Because consequences are far greater and staying on diet. When I was off I had dealt with depression,anxiety migraines that never seem to want to go away, moodiness and having a hard time trying to make life decisions or any decisions in that matter that are rational. Dealing with all those side effects, effected every part of my life. I was super socially akward. I forgot what it was like to feel healthy. When I got back on diet I felt the world of a difference. Every struggle I had with the side effects to high levels disappeared. I was able to think clearly and was just loving life. Ans still am. My relationships are alot healthier. I truly recommend anyone that's off diet to consider to getting back on diet. Because being healthy and feeling good is so much better. Then always feeling awful. Like there's constantly a dark cloud over you. 

Conquering maternal pku

From the time I was freshman in high school to the age of 23 I was off diet. 
But on December 4th of last year is when we found I was pregnant. My levels were currently at that moment in time were an 18. Which scared the hell out of me. And not sure how I was going to manage this challenge. But from going to Emory metabolic camp for years. They taught me a lot about maternal pku. As soon as I got the news that it was positive I contacted my clinic. Within 5 minutes from the email that I sent. They called me.  They already had a plan set in stone for me. In the begining they wanted me my phe intake to be 200mg. And drinking 8 scoops/ packets a day! And making sure I sent out blood spots twice a week. In the back of my mind. I knew that I was ganna struggle in cutting out foods that I was eating while off diet. But it was also a challenge to track my phe intake. Luckily they recommend how much phe website. And I fell in love it. It helped me so much. I basically lived off salads and low protein pasta at the time just to make sure I got my levels down. But within two weeks of finding out I droped them to 2.0! I was so proud of my self. For about 6 months of my pregnancy I was nauseous all the time. I didn't know until i was informed by my clinic that puking was not good for my levels. Which I struggled for the first two trimesters of my pregnancy! To the point I had to ask for nasusa medication. Which by the way I hated. It always made me feel like a zombie at work. Because it was pretty strong stuff. I was seeing two different obgyns and going to my pku clinic. I basically lived at the drs office. But it didn't bother me. Because the goal at the end of it all was a healthy baby! When I was about 15  weeks pregnant I found out I was having a boy thru my high risk Dr. My high risk Dr was in charge of doing my ultrasounds and examining the growth of the baby. My regular Dr was just in charge of the delivering and any other needs I have. I've been pretty blessed so far! With out all the support from family, my fiance, friends, and all four of my drs I won't have such a successful pregnancy. I'm truly blessed. Pku pregnancy isn't easy but it can be manageable if you have the strength and motivation to do so. It trains you to start becoming selfless and thinking like a mother. Pku maybe a pain in the ass at times but it makes me stronger in every way. 💙

Having pku as a kid.

When I was a kid. It wasn't so easy having pku. I never liked being an outsider. I hated the attention I got from people when it came to eating things differently then others. The constant questions were always annoying. Seems like in today's world kids don't like for others to be different. Luckily my family always made me feel as normal as possible. my dad always tried to cook foods that were almost similar to what they were having for meals. But when it came to school functions like school parties that's when the unwanted attention was there. With so many questions and weird comments. Or any time I had brought my forumla out to drink. The first question I get is... Is that goat's milk? First of all that's gross and second of all why in the world would I carry around goat's milk? Another question I would get is.. is that babies forumla. Honestly NO I hate when people ask that. For any one with pku that's more of a rude comment then a question. Which even when I explained my self what it is. I still got crazy weird looks. Honestly I always wanted to be "normal" just like every other kid. But when I got into high school I realized there's no such thing as normal. and there's not. I rather be different then anyone else. It took a long time to accept that and to be confident about having pku. So why try to hide apart of you from the world just because no one likes others that are different them? I say screw them and live your best healthy life! Live the best version of you! ❤️💙

Introduction of my life with PKU

Hello world! 

My name is Sarah and I have classical PKU. For those of you who don't know what PKU is. It's a genetic condation that was detected at birth. People with pku can not break down a certain type of amino acid called pheynlanine. Having pku means that you have to keep track of everything that you eat and the amount of protein you consume. Over the years a lot of people always looked at me like I was crazy or I just made it up. But the reason why not a lot of people know about it is cause it's a rare diease. There's about 19,000 people in the united states alone with pku. That's why it's so exciting to meet others that have pku. It makes you feel normal for once.  And there's not so many questions all the time! And I don't always have to hear the famous line of I would die if I was you because you can't have meat or hardly anything! But you can't miss what you never had. And nine times out of ten I hear that or I'm sorry. 

I'm not sorry. It's apart of who I am. It's a life style that I'm very comfortable with.