Have you ever noticed people with one or more of the following?
• Looking a lot younger than they are, possibly as pre-teens and teens even in their twenties.
• Nonresponsive to smell, may not have any idea of smell.
• Hearing impairment
• Too short or small looking
• Poor balance many a time
• Cleft lip and palate
• One hand mirrors the movements of the other
• Scoliosis (curvature of the spine)
Then, there are chances of that person having a rare genetic disorder called Kallmann Syndrome, which is defined not only by a delay/absence of signs of puberty but also an absent/impaired sense of smell, anosmia, or hyposmia.
Now, a delay or absence of puberty need not come with the absence of smell. There is a condition in which the person has delay or absence of puberty but has a normal sense of smell. It’s called Normosmic Idiopathic Hypogonadotropic Hypogonadism.
Kallmann Syndrome and nIHH can be treated with Hormone replacement therapy (testosterone in males; estrogen and progesterone in females) so that puberty is achieved. Injections of pituitary hormones are given following pubertal maturation.
What can I do to help?
Many people with Kallmann Syndrome and nIHH have an inferiority complex, limited or no friends at all, are ignored or bullied in school/college, aren’t taken seriously by anybody, and even miss out on things in life others take for granted. They certainly have a difficult life than normal people. Just recollect how it feels to have a blocked nose and can’t smell; now imagine that being the case for the rest of your life.
Imagine all your cousins, classmates, friends, and peers undergoing pubertal changes, and you’re left far behind. Your boy friends are all developing facial hair; your girl friends are all getting their periods. You, on the other hand, are shorter than everybody else and show no signs of puberty. This is enough to make you feel inferior and left out, not to mention everything else that makes it harder.
Imagine being in a public place and a random stranger bullies you thinking you’re a child because you look like one and no one comes to your rescue! It could range from somebody calling you in a singular tense rudely to being mistreated, etc.
If you know or come across someone you suspect to be having this problem, please befriend them! Please ask them how they’re feeling! Chances are they’re lonely, are feeling down, and are dealing with an inferiority complex! Of course, not everybody with this condition is going to broadcast that they have this condition. So, be kind to everybody in general, because even nonpatients can be bullied, can feel left out, etc.
And for those who have KS or nIHH, some famous people like Jimmy Scott have also had this condition. Such people have still gone on to achieve great things in life, so be brave and strong. Don’t lose hope.