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VOICES
of RARE OBESITY

We invite you to explore the first-hand experiences of members of the rare genetic disorders of obesity community.

Insights from 3 families living with symptoms that may be related to rare genetic disorders of obesity

Hunger is a main part of our life.

SYMPTOM 1: Insatiable hunger

And it is always on Nate's mind. It controls him. And hunger is right beside him. I want to say his best friend, but it's not; it’s his mortal enemy. Hunger is his mortal enemy.

KAREN
Mom to Nate, living with POMC deficiency, a rare genetic disorder of obesity

People think that I’m making it up sometimes, and I wish that they could get inside my body and that they could feel the physical sensations of hunger so that they would fully get how hungry I feel.

BECKY
Living with a suspected rare genetic disorder of obesity

SYMPTOM 2: Weight gain despite a restricted diet and exercise

I think there is such a stigma on obesity and it’s directly correlating with, “They must eat too much. They must sit around too much.” With individuals with these disorders, that’s just not the case. No matter how much we cut their calorie intake, no matter how much they exercise, they’re going to either continue being large or they’re going to continue gaining weight.

MOLLY
Mom to Joshua, living with a suspected rare genetic disorder of obesity

I’m gaining all this weight from what’s considered a normal amount of calories; that’s a definite sign that something’s drastically wrong and that it’s a disease state.

SYMPTOM 3: Severe obesity that starts early in life

Between the ages of 4 and 6 months, he had gained about 6 pounds. On average he had gained about a pound every week thereafter. He is the average height of a 6 year old.

And so I did a food log to see how much, and I’m like, “but this is what any child at 1 1/2 would eat.” And he was gaining 3 pounds a week.

It’s a hard job, so I had to focus on the good.

You can take steps to seek more answers about rare genetic disorders of obesity

Talk to a doctor if you or someone you know shows symptoms of rare genetic disorders of obesity

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www.LEADforRareObesity.com
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© 2018 Rhythm Pharmaceuticals. All rights reserved. MC4R-C0087 December 2018.

Hear first-hand accounts of living with symptoms that may be related to a rare genetic disorder of obesity

"Every time we hear, 'We without a doubt believe Joshua has a rare genetic disorder of obesity,' it reminds us that it's not our fault. We didn't do anything to cause this."

MOLLY, MOM TO JOSHUA

"Every 5 minutes, he asked for food, or referenced food, or went to the kitchen to find food. I was swimming in the dark, not knowing what to do."

KAREN, MOM TO NATE

"Take your diagnosis as a source of power and knowledge. Use it to the best of your ability to better yourself and your community."

DENISE, MOM TO DRAKE AND EVERETT

Coping Through the Diagnostic Journey: Karen and Nate’s Story

As soon as you meet him, your face will light up. That's who he is. Somebody once said that he was joy personified.

Nate has POMC deficiency, which is a rare genetic disorder of obesity.

KAREN Mom to Nate, living with POMC deficiency, a rare genetic disorder of obesity

His hunger started at 1 week. He cried of hunger.

Karen: “You had dinner.”

It hurt him, and as a parent I couldn’t do anything. I couldn’t fix it.

I remember he was 5, and in 1 day, every 5 minutes, he asked for food, or referenced food, or went to the kitchen to find food. Every 5 minutes of the day.

Finding the diagnosis was a matter of me going to the doctor and saying, “There’s something wrong with my child. Look at his weight, look at his sleeping habits, look at this and this and this—I think there’s something wrong.”

The doctor walked into the room; he said, “It’s genetics, not anything you’ve done; it’s not what you fed him.”

Dealing with that information afterwards, that was difficult, because that was when I was dropped on my island. That was when I was swimming in the dark, not knowing what to do.

Social media is my lifeline. I can help people, and I can get helped in return. I talk about the bad days and the good days.

If you suspect that you or someone you know might have a rare genetic disorder of obesity, follow your instincts and talk to a doctor

I would say, go with your gut feelings. Keep going until you get the answers. You are the parent. You’re the mom, you’re the dad, whatever. You know—you know there’s something. You can feel it. You can see it. You’re with your child. Push. I’m there for them, and I hope they find answers.

Rhythm is working every day to advance the understanding of rare genetic disorders of obesity and to improve the lives of those affected

LEAD for Rare Obesity logo
www.LEADforRareObesity.com
facebook.com/LEADforRareObesity
© 2018 Rhythm Pharmaceuticals. All rights reserved. MC4R-C0089 December 2018.

Hear first-hand accounts of living with symptoms that may be related to a rare genetic disorder of obesity

"The best two pieces of advice that I have ever received and will give are: trust your instincts, and don't be scared to speak up."

MOLLY, MOM TO JOSHUA

Searching for Answers: Molly and Joshua’s Story

Joshua is 3 years old but is the height of a 6 year old and the weight of maybe a 9-10 year old.

Joshua was born a normal weight but he continued gaining weight right from the start. He gained 6 pounds between a 4- and a 6-month checkup and gained about a pound a week thereafter.

MOLLY
Mom of Joshua, living with a suspected rare genetic disorder of obesity

So I started keeping food logs and said, “This is how many calories he’s consuming. Would this amount justify this amount of weight gain that we’re seeing?” And I ended up hearing no.

He’s physically going over to the cabinet and requesting that snack or requesting the bottle or requesting another food item, and that’s happening continually through the day. So we believe that he is just continually feeling hungry.

So then we went into “Who can find answers for us?” mode.

Instinctually you know; we had continued going to the doctors and explaining that something’s just not quite right or different with Joshua than our other 2 children, and we got a lot of fussy baby syndrome, colicky baby syndrome. But that fussiness continued, and that instinct remained in my husband and I that something’s different and he is growing at a rapid rate.

Joshua’s doctors suggested genetic testing

Every time we revisit a doctor or go to a new doctor and hear “We without a doubt believe Joshua has a rare genetic disorder of obesity,” it’s validating, and it reminds us that it’s not our fault. We didn’t do anything to cause this.

The best 2 pieces of advice that I have ever received and will give are number 1: trust your instincts, and 2: don’t be scared to speak up. You are your child’s voice. You know your child best, and you are the one that’s going to step forward and make those choices and make those changes for them.

Rhythm is dedicated to shedding light on rare genetic disorders of obesity

If you suspect that you or someone you know might have a rare genetic disorder of obesity, follow your instincts and talk to a doctor

LEAD for Rare Obesity logo
www.LEADforRareObesity.com
facebook.com/LEADforRareObesity
© 2018 Rhythm Pharmaceuticals. All rights reserved. MC4R-C0088 December 2018.

Hear first-hand accounts of living with symptoms that may be related to a rare genetic disorder of obesity

"I'm gaining all this weight from what's considered a normal amount of calories. That's a definite sign that something is drastically wrong."

BECKY
Heart in hands
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