Select Important Safety Information
Before using Myalept, tell your doctor if you have any medical conditions including if you have or have had problems with your blood cells, including low blood cell counts (especially your white blood cells), bone marrow, immune system, pancreas, swollen lymph nodes, lymphoma, high triglyceride levels, or use insulin or sulfonylurea.
Camerin’s daughter, Lorelei, lives with GL, is taking Myalept, and Camerin has agreed to share their personal experience with Myalept and GL. Before taking Myalept, always ask your doctor about the benefits and risks of the treatment. Individual results may vary.
So many questions
One day, when Lorelei was almost three years old, I noticed lumps on her forehead and her cheeks were rock hard. She was listless, tired, and running a fever. We ended up in the hospital for two weeks and every specialist we saw seemed to have no idea what Lorelei had.
They did blood work and tests, and we found out she also had swollen lymph nodes all over her body and an enlarged liver and spleen. We later learned the fat cells in her body were hardening and she was diagnosed with panniculitis, which we were told was a symptom of something else. Within two months, all the fat in her body was gone and it’s never come back.
We saw many different specialists each with their own possible diagnosis, but each test was negative and only left us with more questions.
A balancing act
From the time Lorelei was three to five years old, she practically spent more time in the hospital than at home, being hospitalized a total of 13 times. It took almost a year, tons of blood work, and numerous biopsies to get a definitive diagnosis. But finally, she was diagnosed with acquired GL.
Because of the lack of fat and leptin caused by GL, she developed severe insulin resistance and diabetes, which made a complicated situation more difficult. And without leptin, her blood glucose and triglyceride levels were very high. It also wasn’t until a scary episode of pancreatitis that we discovered her body didn’t process fat correctly. That’s when we, including the doctors, learned just how complicated GL could be.
I came to understand that GL is a disease that causes a loss of fat tissue all over her body and causes a lack of leptin. Lorelei didn’t have enough leptin and we struggled trying to get her triglycerides and blood glucose levels down, and she was hospitalized many times.
Living her life
We saw many more specialists – gastroenterologists, rheumatologists, endocrinologists, a pediatric hepatologist. We learned about treatment options and about Myalept, a leptin replacement therapy which was then in clinical trial. It was explained to us how, together with diet, Myalept may help lower her high blood glucose and high triglycerides.
Before starting Myalept, we were trained by her nurse on how to give her injections. Lorelei had a skin reaction to her first Myalept injection, but she’s been able to take her injections well ever since. And the best part was that we saw results within months. Her triglycerides and blood glucose numbers got better. Of course, this has just been her experience.
Lorelei is an amazing little girl. I think sometimes adults pity themselves so much when they have a disease, yet she just runs around, plays, and lives her life. Of course, she still gets sick sometimes and has a lot going on with shots and medicines every day, but she’s a happy little girl, and I’m a proud momma!