Neurofibromatosis

[deajas]

i have neurofibromatosis an within the last couple of days i have noticed a dozen or so redish lumps come on my arm i have been sunbathing in the last couple of days an i have heard the sun can make them worse, i feel really stressed bout the whole thing, neurofibromatosis is general my dad has the condition an is covered in lumps, i jus dread looking like that in the future, altho he never had so many as i did at this age, so i feel i will get worse, i also feel i will b alone for the rest of my life, i jus dont know what to do

[sarah H]

hello my name is Sarah I live in Malta where the summer is hot and long... I dont seem that it effects it, cause I dont see increase in the lumps in the past summers. However I would like to knw if anyone who has any lumps if any are painfull!! I have one of my back and even the shower pressure hurts!!

[ecflagcorp]

Sarah,

The lump(s) on your back, if they hurt get them removed ASAP! The ones that are bothersome or painful should always be removed as soon as you can. The ones that don't hurt, those can wait to a later date. I would recommend going to a doctor that specializes in Neurofibormatosis. I learned the hard way.

I live in southern Mississippi where the summer is hot, humid and long. I haven't had problems, yet, with the sun affecting my NF. Although, my mother has NF as well and she has the small red spots on her legs. I'm not sure if that's from the sun or her blood pressure medicine.

The best we can do is not worry about our conditions too much. Stress does promote the growth of the tumors. Changes in our hormones increases the number and growth too. The best we can do is prepare ourselves and research on the newest updates.

I seriously get tired of people staring and not asking questions. I have no problems answering questions. Since I'm a graphic designer, I decided to make a folding business card that has on the outside, "I'm okay. You can quit staring now." And then they open it and it explains the generic meaning of NF. And then leading them to the NF foundations website so they can make donations! :D

But get those spots removed if they hurt!! Don't prolong it!

-Best wishes