Being diagnosed with Kallman Syndrome can be one of the hardest things to ever go through. Many people don’t know where to turn or who to lean on. Being informed can help and remember that you, or your loved one, are not alone.
What is Kallman Syndrome?
Kallman Syndrome is a rare genetic hormonal condition characterized by failure to complete or even start puberty. Often is it accompanied by lack of smell, which in turn affects taste. This syndrome can occur in any gender but is more commonly diagnosed in males. Infertility can happen if it is left untreated.
There’s no disputing that Kallman Syndrome is a difficult disease to have. It’s not widely discussed, and many people who have it stay silent. Psychological issues that can go along with the disease often cause many people to become depressed and anxious.
The good news? There are treatments available and support groups to join. There are ways to prepare for said treatments and become psychologically sound.
When preparing for treatments that might last many years, you want to get your body in the best shape possible. Hormone therapy’s side effects can vary from person to person, so make sure you go over everything with your doctor. Here are some tips to help you along the way.
Start or continue light exercise. A side effect can be the loss of bone mass or muscle, so making your body stronger should be a goal. Try some yoga and meditate often. Yoga is a good way to stay active without pushing your body too hard. Its practice also incorporates mental health, which is especially important for a Kallman Syndrome diagnosis. Taking a brisk walk or even yard work could also boost activity levels.
Ask your doctor about which supplements would be beneficial. Extra calcium, Vitamin D and Vitamin B12 are three great additions to treatments. A diet that is high in fiber, low in fat, and low in concentrated sweets can limit side effects like fatigue and high blood sugar.
Try to stay on top of other issues that could arise from treatments, like high blood pressure. For example, if you have or are worried about high blood pressure (hypertension), it may be a good idea to purchase a home blood pressure cuff. That way you can monitor it regularly.
Going through treatments can be rough at times, so finding a support system might be useful.
Since this condition is not often talked about, you might feel confused and lonely. But the truth is, many other people are going through the same thing. The best way to find other patients is the internet.
Meetings are held in different places throughout the year so people with Kallman Syndrome can meet and converse with each other in a relaxed environment. Often, experienced experts are present at planned meetings, so you have the option of getting more information or advice as well.
Others have gone through this condition and survived, even thrived. Reading what other people have gone through and knowing that this tough time can be overcome, will help build confidence for the future.
Positive things to remember about this specific condition are actually quite numerous. Reversal of symptoms has been reported in about 20% of cases in both males and females. Physical pain is not a side effect. The only other disease associated with Kallman cases is osteoporosis, which affects bone density. Life expectancy does not go down, so you can have a fulfilling and adventurous life. And always to remember: you are not alone!