Mentor

What I wish I knew about managing PKU
Keeping track helps you stay on track. Whether it’s counting phe/protein from food or checking blood levels, find something you can keep track of to help you stay accountable.

Successes I’ve seen as a mentor
I think my mentees enjoy being able to talk to someone else who has PKU. It can be very comforting knowing they’re not alone. I may have had a similar experience to share that we can talk about. It’s also nice hearing how others manages their diet because it may give new ideas or confidence to make changes.

My fun fact
I’m currently learning Portuguese and have traveled to Brazil multiple times. If you ever want to go there, I have plenty of tips and advice about what to eat and how to find protein/phe content in native foods.

What I wish I knew about managing PKU
If only I knew how successful dietary treatment can be for a child with PKU when my first daughter was diagnosed. Seeing how well the low-protein diet has worked for children, young adults, and adults is a tremendous source of support for me. It gives me hope for my family every day. As a mother of two daughters, who both have PKU, their low-protein diet supplemented with medically prescribed formula for PKU, or “shake”, works well.

Successes I’ve seen as a mentor
I look forward to listening and sharing ideas, experiences, and resources with people in the PKU community as a mentor.

My fun fact
I was on a plant-based diet for many years before having my daughters. To this day, coming up with new low-protein plant-based meals and recipes is a big interest of mine. I’ve also had a life-long interest in science and enjoy reading about and sharing news on health, medicine, and genetics.

What I wish I knew about managing PKU
It would’ve helped if I had known that other people were going through the same thing as me. When struggling with PKU, it’s so easy to feel isolated and like nobody understands how difficult it can be. I now know that I can reach out to my support system and peers with PKU who understand what I am going through.

Successes I’ve seen as a mentor
Prior mentees have gained valuable resources to appeal an insurance denial or to help with formula and medical food associated costs. They’ve also gained a peer with PKU who can understand the ups and downs of it all.

My fun fact
I studied abroad in Australia in college.

What I wish I knew about managing PKU
There are two things: first, knowing about the wide variety of formulas and foods and second understanding the treatment options that can relax the diet restrictions.

Successes I’ve seen as a mentor
We’re a resource of networks, information, and ideas. I’ve had 18 years of PKU caregiver experience. We’ve found creative ways to navigate travel, eating out, clinic and insurance barriers. Something we do as mentors is to build our mentees resiliency – PKU is more than a diet, it’s a lifestyle that requires a lot of adjustment. As mentors we help our mentees take action – to advocate for themselves and to care for their health.

My fun fact
My wild, wild, wish is to be a full-time ski instructor. I avidly follow the women’s US ski team and follow snow reports year-round. When it’s summer in the US, I track snow conditions in New Zealand.

Additional languages
Some Spanish

What I wish I knew about managing PKU
I wish I had known that I don’t have to be perfect at managing my PKU; my care team will still love and help me anyway. For a long time, I struggled with not wanting to send in blood spots until I had done a 3-day phe washout first, to make sure my clinic, (and I), would see only great levels. But these fake levels didn’t help me understand how my diet affected my PKU. My doctor assured me that the team wouldn’t think less of me because of my phe levels, they just wanted to support me. That was a huge breakthrough. I want to be able to help people who don’t have a support system.

Successes I’ve seen as a mentor
I was able to connect my mentee to some important PKU management resources, search for potential formulas, and get in touch with a clinic for a plan to get back on track. I’m really excited to think that her health is better now because she took that first bold step to ask for help with PKU.

My fun fact
I love mountains! So far, I’ve seen the Smokies, the Blue Ridge Mountains, the Rockies, New Zealand’s Southern Alps, and the Himalayas (from a distance!) Every vacation has to revolve around hiking. Thankfully, my husband and daughter love it, too. When we’re not in the mountains, we are dreaming up our next trip!

What I wish I knew about managing PKU
One thing I wish I had available to me while struggling with my PKU diet would have been the community of other people who also had PKU (maybe a mentor or just a group of people that could relate). The PKU struggle can feel very isolating while levels are high, especially when most people don’t experience these side effects with food.

Successes I’ve seen as a mentor
As a mentor, I’ve been able to help mentees navigate their palynziq journey. As someone who’s been on it for 10 years, I understand the struggle of it not working right away and the side effects that come with it.

My fun fact
Something we have been very excited about and have shared is our IVF journey because of our infertility struggles. We now have a toddler who is happy and healthy and PKU free! We have plans to do another IVF transfer, in the near future.

What I wish I knew about managing PKU
Staying active with PKU really does help fight the mental “fog” that most of us PKUers feel daily. Staying active doesn’t mean running a marathon, but taking an intense walk can help…especially when most people don’t experience these side effects with food.

Successes I’ve seen as a mentor
I’ve been a very active PKU individual, and I’ve had to balance excess formula, increased calories, and staying on a stable diet; it isn’t easy, but I believe my journey can help mentees believe that they can still be an athletic individual.

My fun fact
I’ve summited Mt. Rainier (14,400 ft). The full ascent and descent took
36 hours. I might be the only PKU person to have done that.

What I wish I knew about managing PKU
I’ve struggled with my PKU management in social settings where eating is involved; these are often scenarios where PKUer’s are automatically “othered.” Sometimes it’s a funny look from the waiter when ordering with modifications, other times it’s well-intentioned but careless, repetitive, or interrogative questions from whoever I’m with (besides immediate family). I know now is that it is easier to let those things roll off your back than to swim upstream.

Successes I’ve seen as a mentor
For a mentee, there’s a uniquely tangible value to hearing “what I’d wish I’d known then” from someone who has experienced something firsthand. Similarly, mentors like me derive benefit from the knowledge that our experience(s) make others better equipped to conquer similar challenges they encounter.

My fun fact
I was voted “Best to Bring Home to Mom” by my senior class in high school. I can also walk for miles and not get tired or bored.

What I wish I knew about managing PKU
I wish I knew that so many in the PKU community have experienced the same difficulties that I experience and that they’re willing to support me, so I didn’t have to feel so alone. It can be overwhelming when you feel isolated. But the community around me helps me manage that mental toll and gives me the accountability to help me be my best.

Successes I’ve seen as a mentor
I’ve seen my mentees benefit by having someone in their corner that understands exactly what they are going through. Some of my mentees have never spoken to someone else with PKU before. It can be daunting getting back on diet or just improving on habits, especially when everyone in your life has no idea what living with PKU is like. When someone else who’s been there can offer a listening ear or ask challenging questions, it can significantly help.

My fun fact
I’ve run marathons, completed triathlons, and was a rower in college. I love challenging myself with difficult tasks!

What I wish I knew about managing PKU
When my daughter was first diagnosed, I struggled with feeling so alone. I didn’t know what to expect as she grew. I got involved rather quickly and no longer felt alone and now that she’s 9 I know that we can do this together. We can manage her diet and work through anything that might come up. I think everything that we’ve struggled with has made it easier to assist our mentees. We’ve been able to work together through issues that have come up.

Successes I’ve seen as a mentor
I think everything that we have struggled with has made it easier to assist our mentees. We’ve been able to work together through issues that have come up.

My fun fact
My daughter Norah has a nonprofit called Norah’s Bracelets for a Cause. I also love to travel. My dream is to go to Italy and Ireland.

What I wish I knew about managing PKU
One thing I wish I’d known, as a child/teen with PKU, is that I shouldn’t hide it. It made me who I am. I was able to use those opportunities to educate those around me about rare diseases. It turns out they are very supportive of me, and it allowed me to advocated for myself in the world. Don’t ever be afraid to be unique!

Successes I’ve seen as a mentor
A mentor brings another level of understanding. Most of the time, we feel isolated with PKU. Having a mentor allows us to feel a little less “rare”. Having someone who truly understands your struggles is the most helpful thing we can provide to one another. A support system makes everyone’s lives little bit better!

My fun fact
I love to travel. I have only two continents left to visit; South America and Antarctica. My favorite places I’ve visited are: Greece, Egypt, and the Cook Islands.

What I wish I knew about managing PKU
If only I knew of all the tools that were available to me when I found out my son has PKU. The hospital and clinic didn’t offer any support. They didn’t even mention the NPKUA website.

Successes I’ve seen as a mentor
I’ve enjoyed the initial connections I’ve made and I look forward to making a deeper connection with future mentees.

My fun fact
I used to collect erasers, have collected them, and held onto them since I was a kid. However, my son discovered my collection two years ago and has slowly made them disappear.

Additional languages
Cantonese, some Mandarin

What I wish I knew about managing PKU
In my younger days, I was much less controlled on my diet. I knew that I wasn’t managing my PKU as well as I should but when I had other symptoms I failed to connect it to my PKU. After I made some changes to my diet and healthcare, I noticed many of the issues I had were greatly improved.

Successes I’ve seen as a mentor
I’ve had the privilege of mentoring many individuals throughout my career. The main focus of my mentorship is on improving specific areas of interest that my mentee has been wanting to work on.

My fun fact
My intellectual curiosity is unquenchable. I spend a considerable amount of time learning and studying new topics, my goal in life is to become a Jack of all trades.

What I wish I knew about managing PKU
I wish I realized how much it made me anxious and worry constantly.) I feel like it’s much more manageable when my levels are in range. I’m able to put into perspective what my real priorities are.

Successes I’ve seen as a mentor
The program has connected me to so many adults with PKU, both mentors and mentees, who I now call friends. It’s fulfilling when I’m able to help families who struggle with managing PKU, like my family did. Most importantly, I’m proud to be a part of normalizing PKU and encouraging those who struggle that we are the same as the person next to us.

My fun fact
My sister has PKU, too! As adults, we’ve really tried to rally each other on to keep up with the diet, and create and try new foods and recipes.

What I wish I knew about managing PKU
I had a very hard time developing and understanding a healthy relationship with the food scale. Once I found a method that worked for us, I stuck with it.

Successes I’ve seen as a mentor
Everyone’s experience is different, and you have to find what works for you and your household. I’ve helped and received help from so many that have left a lasting impression on our journey. That’s exactly what I hope to give back to my mentees.

My fun fact
I never really knew what it meant to be empathetic until our PKU diagnosis, and now, I consider it one of my greatest attributes.

What I wish I knew about managing PKU
I wish I would have known that it’s okay to ask for help, you aren’t in this alone, and there are other people who’ve gone through what you’re going through.

Successes I’ve seen as a mentor
My mentees have benefited from understanding they aren’t alone and that there’s someone in their corner to help them through the good, the bad, and the ugly.

My fun fact
I compete in Trials events, Dirt biking and snowboarding.

What I wish I knew about managing PKU
I wish I knew how important it is to have support from people who understand what you’re going through. Being able to talk to someone else who knows how bad the formula tastes or how frustrating it is to only be able to order a salad from a restaurant makes it all a little easier.

Successes I’ve seen as a mentor
Mentees have shared that having someone to vent to helps them set goals, and having their mentor be proud of them is most helpful.

My fun fact
I love all things Star Wars, Lord of them Rings, and Harry Potter! I use quotes from each of them to keep me motivated.

What I wish I knew about managing PKU
Find methods of managing your diet that fit most easily into your own lifestyle—you’re more likely to stick to it that way. Some people prefer to menu plan for the week ahead. For me, it was downloading an app on my phone and keeping a travel food scale in my purse so that I could choose and log my food on-the-go. It felt less overwhelming when I gave myself permission to have flexibility and just focus on the next right choice to get where I was trying to be with my phe intake.

Successes I’ve seen as a mentor
Even if you have a strong support system and clinic, sometimes there’s no substitute for talking to someone who can fully understand the PKU experience on a personal level. When I started attending patient events several years ago, I was overwhelmed by how comforting it was just to hear someone else express similar thoughts and feelings out loud—no matter how simple. There’s strength in being “rare” but that doesn’t mean we should have to go it alone.

My fun fact
I work and volunteer in the nonprofit field and was motivated to do so because of the influence and support of nonprofit organizations, like NPKUA, that I benefitted from growing up. While PKU has been a hardship at times, it has helped shape who I am in so many positive ways and was ultimately the catalyst that led me to a very meaningful and purposeful career helping others. Most importantly, it has taught me that you should never view a challenge as a disadvantage—if anything, facing challenges can propel you to view situations from a unique perspective and end up becoming your strongest asset!

What I wish I knew about managing PKU
When I was struggling with PKU, I wish I knew that I was going to grow up and do everything my non-PKU siblings did and that PKU would not rule my life. You have so many appointments as a kid, and have so little control, that it feels like your entire world surrounds PKU. I have a beautiful house, am pursuing my Ph.D., have a job I love, and I wish I could have seen that it was all going to be ok.

Successes I’ve seen as a mentor
My mentees have been able to get connected to clinics, PKU resources, learn about new therapies, and (most importantly) feel connected with someone who understands.

My fun fact
I have been in the touring company of an off-Broadway show and worked as an extra in several films and television series.

What I wish I knew about managing PKU
When I was a pre-teen and teen struggling with diet, it really helped to talk to older adults with PKU, who truly understood where I was and could talk about their experiences. It really helped me think about my goals beyond high school and how taking care of my body and brain factored into that. Then the help and support of my family, close friends, and these ladies helped me set and maintain my PKU goals, which, in turn, helped me achieve my higher education and professional goals. The support of the community can be more powerful than you realize, until you have truly experienced wonderful support!

Successes I’ve seen as a mentor
Sometimes people don’t know where to turn for answers. Sometimes we just need some recipe ideas. Sometimes we need accountability and gentle reminders, or even “competitions” with other PKUers. I have both helped and benefitted from talking with other people with PKU (or caregivers of people with PKU) in all of the above situations. Just because you might need some recipe ideas to change things up doesn’t mean you don’t have a few yummy food combos up your sleeve that they might want to try!

My fun fact
Not only do I have PKU and am active in the PKU community, but I’m also a registered nurse, a church volunteer, a wife, and a mother of four boys with PKU, as well. We adopted all 4 of our sons internationally because they needed a family to care for their PKU. We have our struggles for sure, but all four of the boys amaze me with how they view and handle their PKU in different ways!

What I wish I knew about managing PKU
When I was young, I was secretive about having PKU, and was very selective with whom I would share my experiences. When reflecting back to earlier years, I wish I would have been more open with others because not only would I have realized how accepting people would be about my dietary restrictions, but I would have been better able to closely follow the diet, and as a result felt better physically. I also realized that people accommodated my unique dietary restrictions by ensuring that low-protein food options were available.

Successes I’ve seen as a mentor
One important benefit is to be able to form a connection to another person with PKU who has experienced many similar challenges. This has been important to provide support and encouragement when sharing the difficulties of living with PKU. Another benefit is being able to share ideas and resources with mentees, in order to help make it easier to manage the diet.

My fun fact
As a college student at Xavier University in the 1980’s, I was a member of the intercollegiate tennis team. During the season, we frequently traveled to other parts of the country to participate in matches. I was forced to manage my diet and advocate for myself to perform at my highest level. This impacted the manner in which I dealt with PKU going forward. I was much more confident and willing to advocate for myself.

What I wish I knew about managing PKU
My daughter has PKU, and I wish I knew since the beginning that it’s ok if she’s not very hungry one day and does not eat all her Phe allowance, as long as we keep it consistent most other days.

Successes I’ve seen as a mentor
I have never been a mentor before, but I hope I can share my experience caring for somebody with PKU and help mentees handle their children’s PKU.

My fun fact
I am originally from Rio de Janeiro, Brazil and moved to Texas in 2016 after finding the love of my life.

Additional languages
Spanish, Portugese, some French

What I wish I knew about managing PKU
This is difficult for me to answer because I was let off diet at the age of 8, in 1974. At that time, PKU doctors didn’t know diet is for life. I grew up, for the majority of my life, off diet and never learned to count protein or phe so, if I need to return to diet these would be the things I need to learn. I currently manage my diet with Palynziq.

Successes I’ve seen as a mentor
This is the first year that I will be a mentor for the NPKUA. I look forward to the chance to connect and share my journey with others with PKU. However, in my professional life I work as a Counselor and have guided people through life struggles.

My fun fact
I was the first person in the State of Maryland diagnosed with PKU by Newborn Screening to the best of my knowledge. I’m a husband, father of 6 adult children, and I have 6 grandchildren, but my spirit is much younger.

What I wish I knew about managing PKU
I wish I knew how to meal prep and outline my meals and snacks when I was younger. Establishing good routines was something that I mastered in my teens.

Successes I’ve seen as a mentor
My mentee was able to re-establish care and was back in control of her health and future.

My fun fact
I took ballroom dance classes in high school. I loved it!

What I wish I knew about managing PKU
One thing I wish I knew was how many others there were, just like me, out there with PKU. We share similar struggles. I wish I would have reached out to lean on this amazing community more.

Successes I’ve seen as a mentor
I think mentees could greatly benefit from the process because it fosters a great sense of community and support for one another.

My fun fact
I’ve lived in 6 different states as an adult.