Children with cystic fibrosis high rate dla and automatically excepted!

Children with cystic fibrosis high rate dla and automatically excepted!

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Ashley Rose started this petition

Cystic fibrosis (CF) is an inherited disease in which the body makes very thick, sticky mucus. The mucus causes problems in the lungs, pancreas, and other organs. People with cystic fibrosis (SIS-tik fye-BROH-sis) get lung infections often. Over time, they have more trouble breathing. 

There's no cure for cystic fibrosis, but a range of treatments can help control the symptoms, prevent or reduce complications, and make the condition easier to live with.

Regular appointments to monitor the condition are needed and a care plan will be set up based on the person's needs.

People with cystic fibrosis are treated by a team of healthcare professionals. Sometimes the condition will require treatment in hospital.

People with cystic fibrosis may need to take different medicines to treat and prevent lung problems. These may be swallowed, inhaled or injected.

Medicines for lung problems include:

antibiotics to prevent and treat chest infections
a combination of 3 medicines (Kaftrio) to treat the root cause of cystic fibrosis in people age 12 and over
medicines to make the mucus in the lungs thinner and easier to cough up – for example, dornase alfa, hypertonic saline and mannitol dry powder
medicine to help reduce the levels of mucus in the body – for example, ivacaftor taken on its own (Kalydeco) or in combination with lumacaftor (Orkambi, but this is only available on compassionate grounds if people fulfil several criteria set by the manufacturer)
bronchodilators to widen the airways and make breathing easier
steroid medicine to treat small growths inside the nose (nasal polyps)

Any kind of physical activity, like running, swimming or football, can help clear mucus from the lungs and improve physical strength and overall health.

A physiotherapist can advise on the right exercises and activities for each individual.

Airway clearance techniques
A physiotherapist can also teach techniques to help keep the lungs and airways clear.

These include:

the active cycle of breathing techniques (ACBT) – a cycle of deep breathing, huffing, coughing and relaxed breathing to move mucus
autogenic drainage – a series of gentle controlled breathing techniques that clear mucus from the lungs
airway clearance devices – handheld devices that use breathing techniques, vibration and air pressure to help remove mucus from the airways (for example, a positive expiratory pressure, or PEP, device)

Dietary and nutritional advice
Eating well is important for people with cystic fibrosis because the mucus can make it difficult to digest food and absorb nutrients.

The pancreas often doesn't work properly, making it even harder to digest food.

A dietitian will advise on how to take in extra calories and nutrients to avoid malnutrition.

They may recommend a high-calorie diet, vitamin and mineral supplements, and taking digestive enzyme capsules with food to help with digestion.

Lung transplants
In severe cases of cystic fibrosis, when the lungs stop working properly and all medical treatments have failed to help, a lung transplant may be recommended.

A lung transplant is a serious operation that carries risks, but it can greatly improve the length and quality of life for people with severe cystic fibrosis.

For parents with a newborn baby to find out this news is absolutely heartbreaking children with cf should be accepted for dla with just a copy of their diagnosis, Cystic fibrosis is a wide range of care and treatments, parents find themselves stuck with child care to meet the needs of the lifestyle and care their child will need and struggle to go back to work. children with cf get ill a-lot and they take a lot longer to recover than an average child which makes them need there parents its never ending. 

Cystic fibrosis is around the clock care it never stops and there always seems to be something new and more to keep on top with ! There is never a day off with cf. 

cystic fibrosis is an incurable disease that progressively gets worse overtime please can we change the rules for dla 

please sign so children with cf can be heard and helped more something needs to change and very soon! 

cystic fibrosis is 24/7 care around the clock no days off!!! 


8 have signed. Let’s get to 10!