Meaning of Congenital Hyperinsulinism Awareness Colors

 

The color WHITE stands for the risk of diabetes.

Children with Congenital Hyperinsulinism who undergo a pancreatectomy are not only at risk for continued hypoglycemic episodes, but face the risk of becoming diabetic as well. 

 

The color SILVER stands for children who have physical and/or learning disabilities.

Many children with Congenital Hyperinsulinism require long term tube feeds and use of intravenous fluids and medication designed to prevent recurrent hypoglycemia.   The mechanism of this disease prevents the body from producing ketones, placing the child with Hyperinsulinism at greater risk of brain damage.  A child with this disease must take in food frequently, though they are often subject to random episodes of hypoglycemia.  This disease consumes hours each day and night and often requires extended and frequent hospital stays.

 

The color BABY BLUE and PINK stands for infant boys and girls.

Our goal is to establish newborn protocol for blood sugar testing in every state.  Currently each state varies in their standards (if they have any) with the majority of blood sugar testing being administered on babies born to mothers with Gestational Diabetes only.

 

Thank you!

Thank you to all the healthcare professionals and researchers working hard to find a cure and treating this disease. 

 

To the Families of HI:

We also dedicate our ribbons to the children, adults, and families struggling with the effect of all the different types of  Congenital Hyperinsulinism.

There are so many unknown variables and mutations with this condition, making further research and support extremely important.  The ribbons are meant to assist in gaining knowledge and the means through which the children and adults with Congenital Hyperinsulinism can be properly identified and treated.

 

Ribbon design was based on study information on the outcome of children with HI detailed below.

 

BACKGROUND: The term congenital hyperinsulinism (CHI) comprises a group of different genetic disorders with the common finding of recurrent episodes of hyperinsulinemic hypoglycemia.

OBJECTIVE: To evaluate the clinical presentation, diagnostic criteria, treatment and long-term follow-up in a large cohort of CHI patients.

PATIENTS: The data from 114 patients from different hospitals were obtained by a detailed questionnaire. Patients presented neonatally (65%), during infancy (28%) or during childhood (7%).

RESULTS: In 20 of 74 (27%) patients with neonatal onset birth weight was greatly increased (group with standard deviation scores (SDS) >2.0) with a mean SDS of 3.2. Twenty-nine percent of neonatal-onset vs 69% of infancy/childhood- onset patients responded to diazoxide and diet or to a carbohydrate- enriched diet alone. Therefore, we observed a high rate of pancreatic surgery performed in the neonatal-onset group (70%) compared with the infancy/childhood- onset group (28%). Partial (3%), subtotal (37%) or near total (15%) pancreatectomy was performed. After pancreatic surgery there appeared a high risk of persistent hypoglycemia (40%). Immediately post-surgery or with a latency of several Years insulin-dependent diabetes mellitus was observed in operated patients (27%). General outcome was poor with a high degree of psychomotor or mental retardation (44%) or epilepsy (25%). An unfavorable outcome correlated with infancy-onset manifestation (chi(2)=6.1, P=0.01).

CONCLUSIONS: The high degree of developmental delay, in particular in infancy-onset patients emphasizes the need for a change in treatment strategies to improve the unfavorable outcome. Evaluation of treatment alternatives should take the high risk of developing diabetes mellitus into account.

This information is located on the link below.

http://www.ncbi.nlm.nih.gov/pubmed/12824865