Question

The fourth question on the patient questionnaire asked 'Are there any other effects that NF2 has had on your life?' Thirty-eight responses were received from 19 patients.The responses were designated positive, negative and neutral. Six positive responses were received from 5 patients. Twenty-seven negative responses were given by 14 patients, as well as five neutral responses by 5 patients. The positive responses to question 4 are shown in Table 14.12. Where responses came from the same individual, they are bracketed together.

Twenty-seven negative responses to question 4 were received from 14 patients. Responses were subdivided into psychological effects, effects on personal relationships and marriage, general effects, effects related to hearing loss, effects related to work and employment and effects related to appearance. These are shown in Figure 14.2.

The seven responses related to psychological effects and the six responses related to personal relationships and marriage are shown in Table 14.13.

Five negative responses were related to general effects. One patient described slight imbalance when he was tired or stressed. A further patient stated that he had gone through all the effects of NF2 apart from depression. Another was affected with weakness in the right arm and hand, and noted that her writing was awful on some occasions. One patient noticed pain at the site of her Schwannomas, and had to take analgesics. The fifth patient noticed tiredness.

Four negative responses were specifically related to loss of hearing. One patient described the difficulties in trying to listen to music and current affairs on the radio. A further patient underlined the danger of hearing loss - he had stepped out in front of a bus as he had not heard it. Another patient commented that hearing loss, specifically, can be limiting. A further patient reported his sadness in being unable to hear his children's voices.

Table 14.12 Positive responses recorded by five NF2 patients to question 4, 'Are there any other effects that NF2 has had on your life?' Responses bracketed together came from the same individual

Response

(6 responses from total number of 38 responses)

{'Being deafened made me think more of others and appreciate more my quality of life'

'I learned I could do things I never thought possible'

'The way in which I've managed to deal with the problems it has caused me has meant I have gained a great deal of respect from my friends/colleagues' 'I have retired from work which I feel has been a great benefit for me - not having to get up rushing around on a morning to go to a stressful job' 'I feel fortunate that I could have a very more severe version or progression I

work, I continue to study, and I am well-supported' 'Learned that there is so much else in life that we take for granted'

Domain

Figure 14.2 Grouping of negative responses to question 4 (n).

□ Psychological

■ Relationships

□ Employment

■ Appearance

Table 14.13 Negative responses relating to psychological effects and effects on personal relationships and marriage recorded by NF2 patients to question 4,'Are there any other effects that NF2 has had on your life?' Responses bracketed together came from the same individual

Response

Number of responses

Psychological effects

Depression and anxiety 1

Panic attacks 2

{'The illness takes up so much of our time' 1

t'The illness never goes away' 1

Loss of independence 1

Loneliness and isolation 1

Personal relationships and marriage

Strain on marital partner and family because of diagnosis 2

Concerns because of inherited nature of NF2 1

Did not marry, nor have children because of NF2 1

Guilt because of transmitting condition to children 1

Worry about how children will cope with a deaf father 1

Three negative effects were related to work and employment. One patient said that he had been less ambitious in his career because of being affected with NF2. Another patient stated that he was unable to obtain employment because of his NF2. A further patient, who was asymptomatic, voiced his insecurity about the future and the need for financial planning.

Two further negative effects were related to appearance. One patient stated that in earlier life he found difficulties in making relationships with the opposite sex. A further patient said that people thought that she had suffered from a stroke.

Five neutral responses were made to question 4. One patient reported surgery for other Schwannomas. Another patient said that she was looking after her mother who was quite severely affected with NF2. A further patient said that she had been fitted with a hearing aid on her better ear, and she needed a loop system to be fitted in her home.Another patient said that people were unaware of NF2 as it is such a rare condition, and could be suspicious when she started to describe her problems. The fifth patient said that 'Early diagnosis is good for family planning, but it leaves you knowing for years that you have a ticking time bomb - it's a double-edged sword'.

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