Thursday, April 03, 2008

What do I want to say to the world's top NF researcher's?

On facebook there is a group for those of us with NF2. Another girl with NF2 posed the following question and below is my response to the discussion:

What do you want to say to the world's top NF researchers?

While it is important to find a cure, there are still many devastating side effects people with NF2 suffer.
What is being done to address treating and alleviating these symptoms while the search is to stop tumor growth?
What I am referring to are the following permanent conditions that we are left to deal with as the result of tumor growth, radiosurgery, or surgery:
1) Ocscilliopsia (jiggling of the eyes which impairs vision)

2) Nystagmus caused by damage to the brainstem from any of the above which also impairs vision and has an effect on balance for those who need to depend on their eyes.

3) Imbalance - what is happening with the balance implant and what type of therapies are being implemented to improve balance in our specific situation?
More than anything this is a serious safety concern as many of us have suffered injuries and some people are even confined to a wheelchair as they can no longer function due to the severity of their imbalance.

4) Swallowing, eating, and dry mouth stemming mostly from lack of saliva production which also rapidly increases tooth decay.
Is research being done to stimulate the inactive salivary glands?
Due to the lack of saliva, the enzymes needed for digestion are absent or too few making eating for many challenging.
Is an enzyme spray being developed to address this problem?

5) Due to injury to the facial nerve, often the tear glands are also affected causing loss of tear production and dry eyes. To add insult to injury, this condition is enhanced if facial paralysis prevents the eye lid from fully closing requiring a gold weight implant, application of gel drops or ointment at night, or taping the eye lid shut at night. Although restasis is available, many people experience eye irritation and cannot use them.
What research is being done to find a way to stimulate these glands? The need to use eye drops continuously everyday for the rest of our lives gets very expensive and insurance does not cover them.

6) There is a very high incidence of damage to the facial nerve causing facial paralysis for many people. Not only is the physical appearance affected but many of the problems I have mentioned above along with food unknowingly falling out of the mouth and drooling, become serious issues we have to contend with on a daily basis.
Further, due to the onset of deafness which often results in this condition, we need to rely on signing communication to get along in the world. However, facial expression is a very important part of sign language to convey meaning. The loss of facial animation creates an obstacle in expressing oneself accurately through sign communication. For all these reasons, facial paralysis has been a daunting and life altering problem for people with NF2 and we have desperately searched for methods which could correct the paralysis.

What procedures are proving successful and viable in facial reannimation?

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