![]() ![]() You should therefore use a reliable method of contraception. It carries a risk to the mother’s life of up to 50%. Pregnancy is not recommended in patients with Eisenmenger’s syndrome. Due to the increased risk of infection, we would advise against tattoos and piercings. It is important to maintain good dental hygiene. You NO LONGER need to take antibiotics for dental work and during surgery to decrease the risk of endocarditis. Some of these drugs require blood tests every few months at your GP surgery. These are prescribed and delivered to you by the specialist unit in Sheffield. ![]() There are some medications that can be prescribed to try to slow the progression of high blood pressure in the lungs. Medication that lower the pressures in the lungs This should make you less breathless and should also decrease the swelling in your ankles and abdomen. This takes pressure off the heart allowing it to pump more easily. Water tablets (diuretics) make you pass urine more frequently and therefore decrease the amount of excess fluid in your body. We may prescribe you blood thinning medication to decrease your chance of forming clots. Treatment is therefore aimed at controlling symptoms and preventing complications. There is no cure at present for Eisenmenger’s syndrome. Abnormal rhythms can also increase the risk of developing clots in the heart. This can give symptoms of palpitations, dizziness and fainting. High pressure in the lungs causes the heart to stretch. This makes you more breathless on exercise and can cause fluid to collect around your ankles and stomach. Over time, this pumping action of the heart can become tired. Very occasionally, if a patient’s blood gets extremely thick, we may need to take a pint off (‘venesection’), but this is rare.Īs the blood pressure in the lungs increase, the right side of the heart has to work harder to push the blood around the lungs. Sometimes thicker blood does not clot as well as it should do. Some doctors also think that there is an increased risk of blood clots on the lungs and brain, but this is not proven. This can lead to headaches and loss of concentration, pains in arms and legs and pins and needles. If you are cyanosed (blue), your blood becomes thicker than normal. Palpitations, fainting and coughing up blood are important symptoms that you should always tell your doctor about. Chest pains occur from time to time, but are not usually a sign of major problems. Some people are short of breath on exercise and may be generally tired. Many people feel very well with Eisenmenger’s syndrome for many years. As a result of the high pressure it is difficult for the heart to pump blood round your lungs and some blue blood leaks into the red side, often causing you to be a little blue (cyanosed). This high blood pressure in the lungs is called ‘pulmonary hypertension’. doi:10.1002/ajmg.a.Eisenmenger’s Syndrome occurs when a hole in the heart (or other defect) allows too much blood to reach the lungs in childhood, damaging the lung arteries and leading to high blood pressure in the blood vessels in the lungs. Quality of life in adolescents and adults with CHARGE syndrome. Hartshorne N, Hudson A, Maccuspie J, et al. Influence of hearing loss and cognitive abilities on language development in CHARGE Syndrome. Vesseur A, Langereis M, Free R, Snik A, Van ravenswaaij-arts C, Mylanus E. Aspiration in children with CHARGE syndrome. White DR, Giambra BK, Hopkin RJ, Daines CL, Rutter MJ. National Organization for Rare Disorders. Molecular and phenotypic aspects of CHD7 mutation in CHARGE syndrome. Zentner GE, Layman WS, Martin DM, Scacheri PC. Seattle (WA): University of Washington, Seattle 1993-2020. Available from: In: Adam MP, Ardinger HH, Pagon RA, et al., editors. ![]()
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