Yesterday I got something very interesting from the National Institutes of Health on the study I did in May of this year. What came in the Mail was the summary of what they found in me during the time at NIH. As many of my readers know, in May I went to the National Institutes of Health to take part in a Research study to help them learn more about my Intersex condition, which is Kallmann’s syndrome. It was very fun and you should read that blog post I did about the National Institutes of Health in Bethesda Maryland.
Therefore, what I learned from my time at NIH is that on top of me having Kallmann’s syndrome and no ability to smell anything. I have a host of issues they found in this order
- Kallmann’s syndrome (Hypogonadotropic hypogonadism and anosomia). Which means I have the KAL-1 Gene of Kallmann’s syndrome.
- Right Sensorineural hearing loss with congenital absence/marked hypoplasia of the right cochlear nerve.
- Mypoia, exotropia right eye, mild amblyopia left eye
- Vitamin D issues
- Weight issues
- chromosome 16 is missing from my DNA
What is very interesting that the Right Sensorineural hearing loss has a root cause of why I have hearing loss in one ear and why my left ear is pulling double duty and compensating for the right ear. Which NIH wants me to come back for a study on those ears as well. As for the eyes issue, Now I know why my eyes act a bit funny and I can see it in my pictures I take of myself.
As for the DNA test, I am still waiting for them and they should done by the end of the year. One thing I learned so far is that in part of my DNA, I am missing Chromosome 16. Which is very interesting for me and don’t know what the link is to Kallmann’s syndrome, though I hope over time they can find out and tell me about it as well.
Though Overall, I learned a lot about my medical condition and gleaned into many things that I may have never knew about.