As a family we are trying to spread awareness and also do everything we can to help my daughter Erin who suffers from Trigeminal Neuralgia ( atypical type ). She has been fighting this debilitating condition for over a year now. This condition is often referred to as the Suicide Disease because the pain is unbearable and the treatments and medications are not always effective in relieving pain.  

She has undergone 3 surgeries to try and combat this horrible condition. Unfortunately this has not helped her in gaining a normal life. She is confined to her pain. Most days she is not able to leave her bedroom. She is not able to talk, has a limited diet, is unable to cook, or do her own laundry. She has a complicated case of trigeminal neuralgia since smells trigger a burning and intense pain in her nerve.  On the Fourth of July we had to put plastic over her windows and doors in order to keep the firework smoke out.  She couldn’t blow out a candle for her 35th birthday this year.  We all have to come separately hoping we can see her.  If we come in her house and smell bad we either have to leave or she will go in her bedroom for awhile since we contaminated her other areas of the house.  

We cannot simply go to her house and keep her company. We all have to take showers sometimes twice in order to not have any smells on us that trigger her pain.  We cannot wear any perfumes and have to use fragrance free soaps.  We don’t mind making this sacrifice for her but out in the world it is impossible for her to live and be able to do things since these triggers are everywhere.

Many various things such as rubbing alcohol, using markers, smoke, spices, cologne, and perfumes trigger this pain that sometimes she can’t be in her own house if the smell gets in so she will have to go sit in the car with the windows rolled up.

Imagine waking up everyday feeling like you have razor blades in your mouth if you try and talk.  I cannot imagine.  She used this anology to describe how she feels. Also, saying the pain is like needing a root canal in every tooth 20 times fold. When her mouth burns she said it feels like someone is taking a lit cigarette and putting it on the roof of her mouth.  This is no way for a person to have to live and she has been fighting and is a very strong person but is suffering everyday and we would love to give her hope that she can do something else to try and fight this horrible condition that has taken so much from her and making her suffer.

We want her to be able to live a normal life such as to be able to be with her friends and family outside of the house, eat  hot and cold foods, do her own cooking and laundry,  go grocery shopping, out to the movies, take a walk, go back to work and be able to do all the things she enjoys that she can no longer do.

We have looked into ways that we can help her and have done research on Stem Cell therapy. Unfortunately this is not covered by insurance as it is not FDA approved but many people have found it helpful and it is being done around the world. The goal of this therapy is to heal the nerve by rejuvenating the protective layer of the nerve known as the myelin sheath which in her case is damaged and exposed causing her pain everyday.  

This procedure comes at a high cost of 10,000 . Unfortunately we do not have the means as a family to pay for this so we are asking if you could please donate any little bit will help us reach this goal so we can give Erin this treatment option that she wants in hopes to give her the life she deserves pain free.  She is an amazing person who has suffered far too long. Thank you all for your generosity and continued prayers! End TN.