Ability Forum

[GAM]

Hi all,

I have Neurofibroma Type 2 (NF2) [http://en.wikipedia.org/wiki/Neurofibromatosis_type_II]. I was diagnosed 13 years ago and have undergone two surgeries - one each on brain and spine - and one radiation therapy. I have total hearing loss in left ear and very low residual hearing in the other - which is dwindling gradually. Weakness in leg, decompression of spinal column, imbalance due to brain tumours, lack of eye coordination are affecting mobility. I can still walk - on flat, familiar terrains. But not for long, I suppose.

A few of the typical effects associated with NF2: slow and unpredictable regressive condition; fatigue that is not explainable medically; mood swings and depression as there is a no 'stable condition' which one can accept and move on. Worldwide, the prevalence of NF2 is 1 in 25000. The condition is genetic - 50% inheritable. Spontaneous mutations too occur.

There is no known cure for NF2 - research is still in nascence with no proven results. Lifestyle management is an option that works. Surgery is not always an answer as the side effects can be worse than the symptoms. In some cases, surgery is not even possible (my lower spinal tumour is one such).

I have been fortunate to have a few systems in place before the condition became severe. I work full time at a supportive organisation. The fact that I had been employed and known in the same organisation several years before the situation turned serious might have helped. I have a loving and caring family. Friends, books, writings are the other parts which make my life full.

It is great to be here - among the spirited and enthusiastic bunch of people. If there is any way I can help, please drop a response to this post, I will get in touch with you.

Cheers,
Girish

Hi all,

I have Neurofibroma Type 2 (NF2) [http://en.wikipedia.org/wiki/Neurofibromatosis_type_II]. I was diagnosed 13 years ago and have undergone two surgeries - one each on brain and spine - and one radiation therapy. I have total hearing loss in left ear and very low residual hearing in the other - which is dwindling gradually. Weakness in leg, decompression of spinal column, imbalance due to brain tumours, lack of eye coordination are affecting mobility. I can still walk - on flat, familiar terrains. But not for long, I suppose.

A few of the typical effects associated with NF2: slow and unpredictable regressive condition; fatigue that is not explainable medically; mood swings and depression as there is a no 'stable condition' which one can accept and move on. Worldwide, the prevalence of NF2 is 1 in 25000. The condition is genetic - 50% inheritable. Spontaneous mutations too occur.

There is no known cure for NF2 - research is still in nascence with no proven results. Lifestyle management is an option that works. Surgery is not always an answer as the side effects can be worse than the symptoms. In some cases, surgery is not even possible (my lower spinal tumour is one such).

I have been fortunate to have a few systems in place before the condition became severe. I work full time at a supportive organisation. The fact that I had been employed and known in the same organisation several years before the situation turned serious might have helped. I have a loving and caring family. Friends, books, writings are the other parts which make my life full.

It is great to be here - among the spirited and enthusiastic bunch of people. If there is any way I can help, please drop a response to this post, I will get in touch with you.

Cheers,
Girish

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[srividyaa]

Hai Girish,
Welcome to the forum......

Hai Girish,
Welcome to the forum......

[Kr_iyer]

Welcome Girishji,

All of us have some disability or the other. I also got paralysed due to stroke in right side.

Please share your thoughts.

_________________
If they answer not to thy call walk alone - Rabindranath Tagore

Karthikeyan R Iyer

Welcome Girishji,

All of us have some disability or the other. I also got paralysed due to stroke in right side.

Please share your thoughts.

_________________
If they answer not to thy call walk alone - Rabindranath Tagore

Karthikeyan R Iyer