Patient Story – Aziza

Aziza lives in Scunthorpe was diagnosed with Muscular Dystrophy Type 2 in 1996 when she was seven. It is a condition which affects the muscles and the respiratory system, and Aziza has used home mechanical ventilation since her diagnosis.

One of Aziza’s lungs doesn’t work and the other operates at less than 30% so it is very important that she sleeps with her ventilator.

She uses it for 9-10 hours each night and occasionally in the day, for example in the summer if it is humid this affects her breathing so she uses the ventilator for a few hours, or if she gets a chest infection it also helps to ease the pressure on her lung.

She feels that home ventilators have come a long way in the past 27 years when she says the machine was like a toolbox – heavy, not very attractive or easy to transport. Now there are lighter, portable versions which can operate on a battery.

She recognises that HMV keeps her alive and also enables her to enjoy her life.

Aziza says: “My ventilator allows me to have more normality in my life. I’m a very sociable person but having a portable ventilator means that I can enjoy going out with my friends to concerts, pubs and meals, and can also go away with my partner.

“It also keeps me out of hospital. I still have occasional need to go into hospital, but it is much reduced. 

“I feel that it is very important to look after my health and I believe that the buck stops with me. The medical professionals can do so much but if I don’t take care of myself my health will suffer.

“I have a fantastic family – my Dad is amazing and has always been my champion and I wouldn’t be here today without his support. I also have a good group of friends who look out for me and my medical teams in Scunthorpe and in Leeds are fantastic so I’m lucky to have such as great team around me.”

Aziza also uses cough assist which she feels has done wonders for her health. She recently had a chest infection which would normally mean admission to hospital, but she was able to manage at home with the help of one of her carers.

The advice that she would give to others who need to use HMV is to look after the ventilator – keep the mask clean (Aziza uses antibacterial wipes on hers), keep a spare mask and filter if you are going out and make sure that your battery is full recharged before leaving home. If you are going away, take an extension lead, the longer the better to ensure that you can reach the plug and don’t leave the device on the floor so people can trip over it.

She also says that she keeps a blue folder in case of a hospital admission, and this has her medical history, her prescriptions and importantly her ventilator setting. Her ventilator is also the first thing she takes to hospital as if admitted to A&E, the medical team aren’t respiratory specialists so it is very important that you take the device and information with you to help the medical staff give you the care you need.

The symptoms of Aziza’s condition started when she was very young – this was difficult as she wanted to go out with her friends and to go to school to learn, therefore she didn’t always follow the advice given. But her advice to other young patients is to listen to your parents, they know what is best for you. She feels that her stubbornness meant that she left it too late and experienced respiratory failure so I had to go into ICU on a full ventilator.

In conclusion, Aziza says, “I’m very grateful to be here and to have had the opportunity to do things in my life that I wouldn’t have been able to do without my home ventilator.”