As many people within the rare disease or chronic illness community know, having support is crucial and important. Being able to find support means that you find others with your same condition, feel less alone, help raise awareness and spur research, and simply find others who you don’t need to explain everything to. According to a July 29 press release from the Human Growth Foundation (HGF), there is now a new online support group available for adults with growth hormone deficiency (GHD). Interested in joining? Check out the Facebook group here.

Growth Hormone Deficiency (GHD)

The National Organization for Rare Disorders (NORD) explains that GHD is:

a rare disorder characterized by the inadequate secretion of growth hormone (GH) from the anterior pituitary gland. GHD can be present from birth (congenital), resulting from genetic mutations or from structural defects in the brain, [acquired] later in life as a result of trauma, infection, radiation therapy, or tumor growth, [or idiopathic, with] no known or diagnosable cause.

In childhood, GHD may manifest with any of the above causes. However, in adult-onset cases, most causes are either pituitary tumors or brain trauma. GHD may lead to proportionate dwarfism. Symptoms and characteristics of GHD include:

• Delayed puberty
• Slowed or absent growth
• Short stature
• Low blood sugar
• Slow tooth eruptions
• A younger-looking face
• Headaches
• Excessive thirst
• Increased urination
• Osteoporosis (in adult-onset GHD)
• Fatigue or lowered energy (in adult-onset GHD)

The Support Group

Initially founded in 1965, the Human Growth Foundation (HGF) is a nonprofit organization whose mission is to provide patient support and advocacy, research, and educational resources to those with  growth disorders. Thus, the new support group aligns perfectly with the HGF’s mission. In order to join the Facebook group, patients – or caregivers – must first fill out a 4-part questionnaire. Once approved, they will have access to the group, which currently has over 200 members! Altogether, the aim of this new support group is:

• To share each member’s experience with growth hormone deficiency
• Facilitating the exchange of news, concerns, and resources
• To develop a stronger community