Hi I’m Lily

[lilyg5]

Hello! My name is lily, my dad recently told me that he set this board up so that we could learn more about HFI when I was very young. I’m 14 now and I’m really excited about being on here and hopefully finding another 14 year old girl or other teens that I can talk to about what we go through!

[Stefanie (Ziba)]

Please thank you father for setting up this board. My son is 3. I hope you find another teen on here to bond with :-)

[rysmom14]

Hi Lily!

I think we are all so glad that this board was created. it has helped so much in navigating HFI. My son is 4 and has HFI. Im sure there will be other teens that chime in, so you have someone to connect with.

[Tammy]

Hi Lily. It's hard to believe that you are 14 now. Wow. I've been here from the beginning, off and on. It's nice to finally meet you after all these years

[colormist]

Hi Lily! There might be some other teenagers with HFI around--or at least their parents. I've had HFI for 38 years and I remember my teenager years being very difficult for HFI--especially not knowing why I kept feeling sick with certain foods!

[Katie535]

Hi Lily,
I’m an adult with HFI who was diagnosed a couple of years ago. But I wanted to let you know that I am so grateful to your dad for creating this forum- it has changed my health and the health of my youngest brother. It has also helped me a lot by “meeting” other people who have had similar experiences- it really goes a long way to know that I am not making up my reactions to many foods. Before he knew about HFI, my poor brother, who has a great deal of self control and drive, was determined to overcome his dislike for ice cream because his friends loved fancy ice cream. He was just plain fed up with his strange reactions to foods that everyone else loved. So every night, he ate a small bowl of ice cream to try to force himself to fully embrace the joy that his friends found in this dessert, and he become sicker and sicker. He could barely work, and his doctors had no idea why his liver enzymes were climbing. Thankfully, I found out about our HFI before he suffered permanent liver damage. I guess I’m telling you this story because i just want to acknowledge that it’s difficult to not be able to participate in something that your friends find so enjoyable... like being an ice cream lover. As a teen, that can be especially difficult. Thankfully, most of the foods that people with HFI like are the foods that are safe for us :-) this forum has helped me personally find a group of peers that I am very thankful for 😊

[lilyg5]

I’m so happy that this has helped everyone! My dad told me before they really didn’t have a website like this, except the one close to this was in a different language! But it is hard as a teenager because your teacher will sometimes do a survey asking which type of candy do you prefer? M&M’s or Skittles, or whenever your teachers award you candy for doing good on something and as a result, your friends swarm around you, and whenever teachers are handing out cookies and treats for a party and I have to bring a bag of potato chips. But there’s lots of good reasons about having HFI because most people don’t get so excited for food like we do lol. If my dad found out about something that I can have like a microwaveable dinner that has pasta, nuggets, or mash potatoes, I’m literally the happiest person in the world. Also reading every single ingredient on the ingredients list can get annoying, but it pays off whenever I can have it! Before I found out about this website, it felt like I was the only one in the world going through this because everyone I met could have everything. It’s nice to feel like I’m not alone and people here are helping eachother to find new recipes, and new things to eat!

[colormist]

You're right Lily! I get totally excited when I find a new food I can eat. Things like lunchmeat or chicken nuggets send me over the moon!

[Julia loo]

Hi Lily, my daughter will be 13 in April and was diagnosed when she was 10 with HFI. We live in Melbourne Australia and has expressed interest I knowing other Kids with HFI. I will let he know you have posted on here.

[jenn123]

Hi Lily,
As has been said many times, your dad did a great thing starting this site where we can all exchange experiences. It certainly is helpful.
My daughter is 11, and there are many moments that are a unique challenge. At the moment the most difficult to manage is whenever she hangs out with her friends or goes on an outing, keeping to her needed structured schedule of food and water is a challenge. She starts having fun and forgets to drink or have a snack then before she knows it, she is a wreck. She also has challenges with temperature - sitting in a window seat on a field trip is too much sun and she becomes sick, swimming at a friends house if the water is not warmer water temperature and she gets sick. She also does a competitive sport and workouts after a break makes her sick until she is back in top shape again. (This has been a learning curve for how to do it safely). Staying hydrated on air flights has been a challenge as well.
It would be very nice to hear experiences of school age kids. Lots of tears and getting used to others making comments about how much they love their treats in their school lunches or handling of the ‘let’s go get ice cream’ invites. Even the kindest of friends forgets to be sensitive sometimes 🙃

[ukbill]

Hi Lily,

Yes we all have very much to thank your dad and mother for in this site.

I can honestly tell you that peoples lives have been saved by this forum.

Parents who were desperate for good information have been helped.

Many many of us with Fructosemia / HFI have had our well being and health improved, and all of us have found new foods we can eat.. and realise some we should not.

When you speak to Doctors always use the other correct name for the condition .. i.e Fructosemia.

The reason for this is no medical professional will take an "intolerance" as life threatening or even seriously.. but tell them you have Fructosemia and watch their faces change and they suddenly get very serious and start doing their jobs properly.

Well that is if you are talking to a qualified Doctor who has read the odd medical journal since they qualified 50 years ago.

I hope you find many teanagers to share your stories with and feel far less alone and "different"

Keep smiling

[lilyg5]

Thank you so much for sharing that with me. I had no idea there was a real name for it. When speaking to doctors I will use it from now on. Thanks again!

[antonia]

I echo the gratitude to your dad for creating this board. We are undiagnosed and have not found doctors who will acknowledge my daughter's fructose intolerance, or at least not any that will acknowledge that it's the source of her metabolic distress or hypoglycemia. But we've found a way to better health by listening to the experiences and advice of others on this board. I don't know where we'd be without it really.

My daughter, almost 8, is always asking if there are other kids out there that have the same diet as her. She has some friends with allergies but it's just not really the same thing. I tell her yes, there are, just not any that live close by. But this is not necessarily a bad thing because HFI then connects you to people all over the world. Which is a pretty neat thing, I think. Good luck in finding other teens to connect with, you will find them in time.

[ukbill]

Lily can you ask your dad to please make a few of us regulars admin so we can clean off the spam that is ruining this forum just now?
thanks

[Stefanie (Ziba)]

Yes, please. It is shameful that ignorant cruel people have hijacked this special forum. We need to reclaim it and not let them take over!

[lilyg5]

Hi sorry I haven’t gotten back in a long time. Is this still a problem I need to tell my dad about?

[colormist]

Hi Lily,
I was given moderator powers by the forum hosts and I think the issue has been resolved. I haven't had to take too many posts down since I was anointed with new special powers.