Kallmann syndrome - Invisible condition
I got increased on my sleep med, from a psychiatrist after one of the two falls I had, not aware I had a #Concussion . I was experiencing some increased #Mania . At first everything was just concussion symptoms besides that. Went to ER, was told I definitely had a concussion for sure. Started the med increase and started having visual distortion for a few days after diagnosis. Mania died down. But the concussion symptoms seemed to have been getting better and now I’m having crazy more than normal amounts of #Mania and #Insomnia along with trouble breathing. I was tested for #COVID19 and came back negative. But there have been people recently in our apartment not properly wearing masks and I did sort of fall again today while bathing. I’m also on #HRT for my #GenderDysphoria and the #testosterone might be why I feel like I’m having trouble breathing because stuff is developing. The mania is not horrendous but I am not sleeping and hyper. I don’t know what to do. Anyone have tips or suggestions or has been through similar situations?
Rare disease information on the internet.
One of my pet hates is the the internet meme "Do not confuse my medical degree with your Google / Internet search."
Thankfully I have never physically met a doctor who has tried this on me but I have heard stories from fellow patients where similar thoughts have been expressed.
Patient advocates can help fellow patients with internet searching to allow patients to ask their doctors informed and relevant questions at appointments.
With any rare condition it should be a two way process when doctor and patient can learn about the condition together.
The idea that "doctor knows best" is not always true.
Following my story being published on the mighty, I was approached to become a contributing writer on Unwritten. It came with deadlines and and commitment yet I still said yes!
I've linked my first piece, just published! In your face, #Anxiety ! 🙈
But to give an overview:
#gender conformity and the drive to exclude the #Transgender community could have consequences for us all!
Caster Semenya is a cis gender woman meaning she was assigned as female at birth and identifies as female. She happens to produce more #testosterone than most women due to a discovered Difference in Sexual Development (#dsd ) condition.
Could the treatment and attitudes she's facing also affect those with induced menopause? #PolycysticOvarySyndrome , #Endometriosis , #CervicalCancer and anyone with a #Hysterectomy ? Who else might be impacted?
Please read and share! And let me know your thoughts!
My invisible condition - Kallmann syndrome / no puberty.
I have Kallmann syndrome. To anybody else, I look like any other regular person perhaps a few years older than my real age.
I was termed a "late bloomer" when in fact I never went through puberty at all. Hormone replacement therapy now has helped with some of the physical development and at least I look at bit older but I still am still underdeveloped physically and emotionally.
I am still infertile, though that could be corrected with specialist hormone replacement therapy.
I am shy, prefer my own company and find it very difficult to be around other people socially or at work. Nobody can see why I should be shy and quiet and it is really only fellow patients that can understand how I feel.
Missing out on both puberty and adolescence has left a big hole in my life that I have found impossible to fill.
A rare condition that is embarrassing to talk about.
I have Kallmann syndrome, a form of hypogonadotropic hypogonadism which causes puberty to fail, which in turn mean patients are normally infertile.
It is not a well-known condition and I was dismissed as a "late bloomer" or "late developer" even at the age of 23 after I had left university.
It is not an easy condition to talk to anybody about, the lack of physical development makes people feel shy and isolated and can have difficulty forming emotional and physical relationships. Even with treatment we still do not go through normal puberty and remain infertile unless we have expensive, difficult to obtain specialist hormone replacement therapy.
Even when diagnosed it is not an easy condition to talk about amongst friends or family due to the very private nature of the condition. The fact that the condition also causes infertility can increase the need to keep the condition private in some family situations.
All this makes raising awareness of the condition more difficult. As a patient with the condition, I can see why my fellow patients do not wish to talk about their condition to others and I totally agree with them.
However, I do like talking about my condition and I refuse to be embarrassed just because I have this condition. I am happy to talk about my condition with anybody to help raise awareness. Early diagnosis and early treatment can be very beneficial.
Male body image with Kallmann syndrome
Kallmann syndrome is a rare hormonal disorder that prevents puberty from starting or fully completing. It can be a difficult condition to diagnose and often people such as myself are labelled as "late bloomers" or "late developers" well into our late teens and beyond.
Men with Kallmann syndrome such as myself do not get the normal physical development that should occur as teenagers. Even with later testosterone treatment we still do not get the development we should have got. Testosterone therapy can give us the muscle development and male sex drive but we are still left with a poor body image.
It can vary a lot between patients with but we are normally left with undersized genitalia which can severely affect our self-confidence and body image. To others, we look like anybody else, albeit perhaps a few years younger than our true age so people can not understand why we might shy of social situations and physical relationships.
Without a correct diagnosis, it can be a lonely situation, thinking that you are the only person in the world not going through puberty. Even with diagnosis and treatment, it can be difficult to have the normal male drive but lack the experience and confidence to act on the drive. Fellow patients can sometimes feel very isolated and are only really able to open up if they are fortunate enough to meet or contact fellow patients.