#PKUphotoaday

PKU Friends.

These are 3 of my really good friends who have PKU like me. We are the same age, born in the same year , have the same clinic, and same medical team. However we did not meet until later in life.

Oliver and I met when I was a teenager, Amanda and I met in our 20s and Katie and I met when I moved to kamloops. Oliver lives in Vancouver, Amanda and Katie and I all live in kamloops.

I do not know what I would do with out these friends!

#pkuphotoaday

Container of Formula

#PKUphotoaday

PKU awareness profile day

There is a lot of debate in the PKU community this past week due to a book called “Defy Your Doctor and Be Healed” by Sarah Cain Corriher.  In regards to her chapter on “infantile phenylketonuria” and how dangerous it is and misinformed she is and how grossly inaccurate the information is . Such as her claims in being able to heal PKU, and that PKU is caused by women on drugs!

These claims are totally totally fake . She has no medical knowledge, facts, research or hard evidence to prove this or back it up, she is not a medical professional yet she has published this.

I am not disagreeing with the fact that its a Bull***t article , I do agree that is discreditable and wrong. However I have not involved myself in any of the debates nor have I ACTUALLY read the article. I have had my opinions asked and  what i feel about it. I have declined to give it any response until this point. I feel that giving it any attention gives it power. Up until now I have simply ignored it. Why have I ignored it? so not to give it power, so not to give it away to spread, or to give it any credit.

This lady is one person, one voice. We as a community have way more power to do good and to have a voice to educate, advocate, support and spread awareness. We have done more good for each other, and for those around us. We have a much more wide reach. For each person we educate and share PKU with, that is one more person who will be less ignorant, and less likely to be naive enough to read this rubbish.

Dont get me wrong, I understand why everyone is so upset, but petitioning and trying to get the book removed is pointless. Sharing her personal contact information and leaving comments on her facebook in a mod like mentality is not going to gain anything.

What will have positive impact, is educating your friends on family on the truths of PKU. Of continuing to stand up and raise our voices in our own lives and societies, spreading truth, facts, information, websites and awareness. using our own social media to share with our friends and family. For every share this story has been given id rather see us each share a true fact about PKU on our facebook profiles for our friends to see.

Share a page, a website, a low pro company, advocate or story.

Many are worried a new parent would stumble upon the article, I understand. However try this, Google PKU. The results depend on your browsing history , for myself my own blog comes up, and the most visited pku sights i have been too.

As a new parent when you google PKU for the first time, you’re more likely to find a facebook group or a credible source and website first. For them , you would be able to interact with real people and join in positive discussions and be educated. ALso keep in mind, new diagnosed families have their clinics and medical staff.

In all I think we are giving this article more of a voice then it could have had , or needed. For that reason, I am not sharing the link, I am not reading the article or giving it any more power, press, and shares. The less it is read, the lower the states and the lower the chance of someone else finding it.

We as a community need to take this experience and learn from it, remember there is still so much work to do , so many that still need education , that each of us can help spread the word. To make it our mission to educated one more person and have them educate one more person, adding voices to our goals. The more people who learn and are educated, the less ignorance , the less misinformation will be available.

I say for every share this article has been given , we should share a true fact about pku, a pku website, or fb group, or research story , for our friends and family to see. This is my challenge to you.

I spent half an hour writing out a post for this group, but then my computer crashed and I lost the post. I will try again though i really hate repeating myself as well I hope i will capture much of what I wanted to say.

As this group expands, we cross international boarders and welcome many diverse people into our community, we tend to forget about each other on a individual basis. We all have our own thoughts, feelings and opinions. thus my reasoning behind this post.

I feel that I need to ask that we all be a bit more considerate of things we post and comment on. A lot of postings in this group are very emotional and become quit passionate.

I mention this because tonight I feel very emotional and hurt over off hand comments made towards pku adults vs being on diet.

It makes me so sad and frustrated. It hurts so much to hear people talk and say things like ” well just follow your diet” ” just go back on diet” ” its just food” and other such remarks. I am one to always say, things we face are not always PKU related, that far to often pku adults blame life problems on their PKU. But however on the flip side of the coin, it is not always easy. It is not as simple as drinking our formula or only eating low protein.

There are so many more sides to having PKU other than diet. There is a whole side that includes psychosocial, physiological , mental , emotional and physical aspects. Specially in adults who have been taken off diet, struggled with diet , have been inconsistent, or have not had access to treatments and low protein foods. It is not as easy as non pku people thing.

I use to tell myself all the time, that once I had low protein food coverage that it would be so easy , that i would never fall off track again , that i would keep my levels in range always. But now I sit her tonight confessing to you that is not the case. I still struggle. I still have side effects. I still have trouble keeping motivated and working hard on tracking and managing my intake, Cooking or baking, meal prepping and finding the time to cook or bake from scratch. Avoiding temptations like grabbing something quick.

I have ups and downs , i fall off track. I get discouraged and I struggle with depression and anxiety. I find myself so jealous and envious of the attention children with PKU get , knowing they will have an easier time. I am very happy for them and grateful for how far pku treatment has come and how our community has grown. Thought I find it difficult as an adult when I see companies, non profits, media and government focus on the children. It makes me feel like why not me? why not the others like me? don’t I deserve support? don’t I deserve help too?

I am 28 years old and I strive to be the support and voice for the adults and an advocate for anyone who has PKU touch their lives. I am the most involved adult I know. I find so many adults have been discouraged from joining forums like this. They cannot relate to many others and they feel disconnected. Judged even. They feel unsupported and that no one can relate to them. So I ask once again please be considerate when commenting. We do not walk in each other shoes, though we walk a similar paths. Please be respectful to others feelings and things you do not understand. PKU effects everyone differently, patients, family and friends. It is dynamic as we are. All of our journey’s are take different paths. We are hear to support each other, and to learn from each other.

I apologize for such a long post, thank you for understanding and thank you to those who read this post.

PKU Friends, Community and fellowship:

Sad news to report and a request for prayers. I do not have many details at the moment.

A member of our group and fellow PKU Adult Kelli Floyd went into cardiac arrest for 20 mins last night and was lifeless for the full 20 mins. They where able to revive her but it does not look good. Please keep Kelli in your thoughts and prayers or send her positive healing energy. I will update when I know more. As a nurse , I know how dangerous it can be to the body to be unresponsive for 20 mins , if kelli does wake up there can be serious side effects. I will pray and send all the positive healing energy that I can!

For those who have asked me for details. I do not know more than what is posted on her facebook. I am hoping someone might be able to shed some light on what happened. It seems so sudden. I do not know of Kelli having and previous health conditions that put her at risk or any past surgeries. I came online today after taking a long hiatus from this facebook account and read the news. I am shocked just like everyone else.

Unfortunately I cannot say that I know Kelli well , we lost touch over the years but we have been lucky enough to chat. and I do see her posts and comments in our online community. She is an inspiration and I know she keeps a positive attitude towards her PKU and helps encourage others to stay on diet and do their best that they can. I wish I had of spent more time chatting and getting to know her and I just hope that it is not to late.

Please be strong Kelli and I am praying for you and your family, friends and loved ones. Someone please keep us updated.

All my life I have had what I call “PKU heros” People who have influenced the evolution of PKU. Who work to improve lives of people like me. Who have impacted treatments, research, and made a difference to daily life for us.

One of my long time hero’s or I guess the proper term is Heroines, is the influential and incredible Mrs. Virginia Schuett. Founder of the national PKU news , newsletter and website.

For as long as I can remember PKU news has been a fixture of comfort and my first source of knowledge,  my first sense of community, and my first connection to the PKU world.

My mom subscribed to it when I was younger, and later she gave me the newsletters. I always looked forward to receiving  mine. Before internet and before facebook it was my only way to feel connected to other with PKU. Like I have said before, I never met anyone else with PKU until I was 13. I looked forward to the stories of inspirational PKU kids who had won the Robert Guthrie scholarship. The pen pals and the recipes. I didn’t really care for the news section when I was younger but now I love it.

I have spoken to Virginia before and I have worked with her on articles before. She has also donated to a few of my events. Each time I have the thrill like im talking to a celebrity or a person of power. unlike with an authority figure where you are nervous and anxious. When I email back and forth with Virginia I am thrilled that she has taken the time out of her life to reach out into mine. I appreciate all that she does and really look up to her. Specially with her work on the PKU food list. That I call my PKU bible. Her hard work and dedication to the community is admirable.

I would really love to meet her one day.

Even in the day and age of social media, internet , emails , websites and blogs. There is nothing like the novelty of receiving a newsletter in the mail. Its always nice to get something other than a bill in the mail. I still look forward to my copy, and I still look forward to the scholarship stories, the recipes , pen pals but now I also like to know about community events, research, news and Virginia’s opinions on PKU topics.

I feel like the PKU newsletter connects us all. No matter where we are , PKU news reaches us all , in each country, there is something relevant to each of us and its a good way to keep up with current events in other countries , to prehaps use in your own campaigns for awareness, research and the progress of PKU!

Though it is with sadness that today I learnt that PKU news is celebrating its 25 years this year but are struggling to keep it going.

Not many people are willing to pay for the newsletter any more with all the free information readily available. I try my best to continue my subscription when I can as the funds go to so much of PKU news projects. Like funding the Robert Guthrie-Richard Koch scholarship, as well as to funding the PKU food list, Recipes and cook books , and all the hard work Virginia does for our community.

PKU news is a non-profit organization that relays on donations and the sales of the newsletter.

 

Here is what Virgina has to say about PKU news:

“it is dedicated to providing up-to-date, accurate news and information to families and professionals dealing with phenylketonuria.

 National PKU News now has over 2000 subscribers who receive the organization’s newsletter. Most subscribers are from the US, but an increasing number are from other countries including from Canada, Western and Eastern Europe, South America, East Asia, and the Middle East. . Subscribers include parents, young adults with PKU, professionals, grandparents, relatives, and anyone with a connection to PKU. 

in addition to publishing the newsletter three times a year, I also produce and publish educational materials for PKU such as the Low Protein Food List and various cookbooks, including Low Protein Cookery for PKU and Apples to Zucchini: A Collection of Favorite Low Protein Recipes. I also respond to thousands of questions and requests from subscribers via telephone, letters and e-mail messages.

Contrary to what many people think, however, I have always been and am still the only employee of the organization. At one time, we had a grandparent volunteer who assisted me in the office, but not for several years. That means when you contact the organization, you should not be surprised when I answer your call or letter —- there is no one else here! I also hope that knowing I am the only one here will help you to be patient in getting a response. I have a lot to do to keep National PKU News going, and an ever-increasing amount of correspondence.

 

National PKU News rents a small office in a privately owned building in Seattle. It is not connected to any university, hospital, or PKU treatment program. Running National PKU News is my full-time job; I no longer am involved in clinical practice ”

After reading Virginia’s email to the listerve today I decided to write a post in her honour in hope of generating interest amongst my readers and perhaps persuade  you into the donating to PKU news or subscribing to the newsletter.

Here is the email that went out to the listserver today from Virginia

I am writing to let you know that the spring/summer newsletter is now at the printers and will be available for distribution soon. If you are a subscriber already and due to renew, please do it right away so that you are on the mailing list (which will be generated on April 27). If you are not a subscriber, I strongly urge you to consider starting a subscription. Please go to this link to renew or start a subscription online: http://www.pkunews.org/forms/PKUNewsLetter.htm

Of course you can also just send me a check, made out to National PKU News and send to the address below. The cost is still only $18 for US, $22 US for Canadians and $28 US for other foreign residents. This price has not changed for 15 years!

This issue of the newsletter is very special, as it marks the 25^th anniversary of National PKU News!! I started the organization in March 1989 and have had the good fortune of being able to keep it going for all of these years. Unfortunately, the newsletter is struggling financially at this time for a variety of reasons, and so I want to urge everyone to help by renewing your subscription or starting a new one–and sending generous donations if you value the organization and what it has accomplished over these past decades.

The special anniversary issue is full of inspiring stories—from this year’s Guthrie-Koch Scholarship winners, all of whom are outstanding, and from 22  of the 300  subscribers who have been with me continuously for at least 20 years. Their children are all successful young adults now, and I think you will enjoy their stories. (I plan to feature more stories from long-time subscribers in other issues of the newsletter as there were too many for a single issue.) Of course, there is also much more in the issue—some great recipes, a fascinating research report giving guidelines for treatment for adults (for the first time based on concrete biochemical/physiological findings) and much more.

Best regards,

Virginia

 

Virginia Schuett

Director, National PKU News

6869 Woodlawn Ave. NE #116

Seattle, WA 98115

 

Tel: 206-525-8140

Website: www.pkunews.org

 

So please I urge you all, to show your support for this wonderful PKU heroine and all that she does for our community. I can strongly say you will enjoy and look forward to recieveing your newsletter in the mail. And your kids will enjoy the pen pal section too!

I really hope we can keep this alive, and not let it fall into the past much like letter writing, paper mail, pen pals and even books. With today’s technology its getting harder and harder to keep things like this around and I would love to see PKU news grow with us into the future .

Thank you for your attention and consideration. I hope you consider what I have presented to you!

 

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I really need to stop looking at all these yummy photos of food!!

One of the biggest reasons why I like pintrest is because of all the meal ideas, recipes and creative food ideas that I would never think of on my own. I have learnt so much from the pins I share, and its given me some great ideas of my own.

I have found so many new ideas tonight that I want to try!! I cant wait to get into the kitchen on my days off and do some baking and creative cooking!

I have a few boards on pintrest you might like to follow, PKU stuff is where I post all things I find that are already PKU friendly. Recipes to convert to low protein/ pku friendly, is my board for interesting ideas that I want to convert and try myself.

My last board is my PKU cookery, its a board of my OWN foods that I have baked, cooked or created and taken photos of. Not all the recipes are my own, I’ve found a lot online and tried them out myself.

So please feel free to follow me and I will follow back!

http://www.pintrest.com

 

I would like to thank everyone who has sent me friend requests on facebook . Thank you for your interest in connecting with me. However I would like to keep my personal fb account small and private and will not be accepting any more friend requests. Please do not be offended. It is not that I dont want to connect with the PKU community , Its that I have way to many social media accounts. I am in most of the fb groups, twitter, and linkeden. I also have a google + account.

 

I use to have a second fb account just for my pku friends but it became to much to mange so many accounts. So if you wish to follow me and connect with me please remember that I have my PKU fb fan page and Twitter account.

 

However if you wish to connect with me on a more personal letter, I have decided to use my google + account as my PKU profile instead of flooding my facebook.  google + has many useful tools and since I already have an account I decided to utilize it. I also have a Google + Community group for PKU so  please feel free to check it out.  I am still learning my way around google + and how to use it to the fullest. One thing I am finding confusing is adding friends who are already on google + from my contact list and not sending invites and bugging them if they are not. Its hard to tell as it just pulls up everyone. So please feel free to add me and send me a message about who you are. I have so many people add me and i do not know who they are or if they are a PKU friend. So please message me so I  know and can add you back!

 

Thank you for your continued support and understanding.