I don't know how rare my condition is but it is rare, maybe one in a billion people would get this kind of condition. It is hard because the medicine for it for one thing is expensive and that medicine makes me nauseous and unable to eat.
On top of that I get the disability of speech and the way I eat food, quite impossible to eat upright so I have to just lay down so food won't spill out from my mouth. I also get a socializing problem, I am a shy person and this condition, my Leontiasis aggravated it.
That forces me to be like a hermit into my room and in fact I do not go out when people are in the house just to save me from hidden ridicule which being human I could really sense that. So when my church mates go to visit me I would refrain and will tell my parents to tell them that I am sleeping or something so they just ceased on visiting me, they are not helping anyway.
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The uncertain nature of my condition regarding my facial disfigurement is one of the hard part from suffering this kind of peculiar misery as I do not really know if it will continue to grow even though I take a medicine for it. The medicine and my diet might work but its effects defeats my well-being as it affects my eating.
So it is just a web of interconnecting dilemma and complications. My appearance is still okay if not from the underlying disabilities behind it and I cannot do anything about it until I get the necessary funds plus to find a doctor willing to fix my mouth not to mention passing the clearance tests for that surgery, it is all hard to bear these burdens so I also needed much prayers and a miracle form God, may God help us all.