Thrombotic thrombocytopenic purpura (TTP) : managing the disease on a daily basis
Published Oct 27, 2022 • By Hela Ammar
There are not many patients that live with the chronic condition thrombotic thrombocytopenic purpura (TTP). While there are some fairly common symptoms, others may vary from patient to patient as they are related to platelet levels and ADAMTS13 activity as well as to the patient's response to treatment.
The rarity and unpredictability of this condition makes it difficult to manage and it can have a significant impact on patients' lives. To better manage the disease on a daily basis, it is important to follow some rules.
What can you do to have a better life with TTP?
We explain it all in our article!
Have a well-balanced, healthy diet
Beyond the need to eat enough and regularly, some nutrients can promote platelet production or clotting, while others should be avoided for certain reasons.
It would be best to base your meals on starchy foods such as pasta, rice, potatoes or bread and accompany them with fish, chicken or eggs to cover protein needs. Beans and lentils, nuts and seeds, as well as soya products are good sources of lean protein. The consumption of red meat should be reduced because, although it provides a form of iron that is easily absorbed by the human body, it is high in saturated fat, which carries a cardiovascular risk that may be increased in patients on long-term treatment with steroids. The same applies to cold cuts, butter, cream, condensed milk, etc.
Instead, focus on unsaturated fats (omega 3, omega 6 and omega 9) which are essential for the brain, heart and skin and which contribute to the maintenance of the immune system. These essential fatty acids are found in olive oil, avocado, flaxseed, sunflower oil, etc. Eating one portion of oily fish such as salmon, mackerel or herring per week would provide you with a sufficient quantity of omega 3, which has a number of benefits such as reducing the risk of heart disease and inflammation and improving liver function. Vegetables are also very important, with a preference for legumes and green leafy vegetables. Some superfoods contain high amounts of folic acid (vitamin B9) such as royal jelly, fresh pollen and wakame. You should opt for steaming or wok cooking to preserve the organoleptic and nutritional qualities of the ingredients.
Eat 5 fruits and vegetables per day
Apart from providing us with energy and nutrients, fruit and vegetables are rich in antioxidants that help maintain our immune system in order and resist infections. Why not treat yourself to a mixture of fruit and vegetables for a snack to get a good dose of vitamins?
Drink plenty of water
Consuming between 1.5 and 2 liters of water per day in addition to water that comes from other sources is essential, to ensure that our body is well hydrated and that toxins are removed.
Avoid certain foods
Some foods, including red grapes, blueberries, garlic, onions and ginger, can interfere with clotting when eaten in large quantities. But when consumed in small amounts, these foods should not be a problem.
Avoid foods that have too much sugar or salt
Eating too much salt contributes to water retention. That is why you should avoid processed foods, pickles, cold cuts, etc. Try to spice things up with herbs and lemon instead. Eating too much sugar is not recommended either. This includes cakes, biscuits, alcohol, soft drinks... It is possible to treat yourself to a biscuit or a piece of cake from time to time, but you shouldn't overindulge.
Limit your consumption of alcohol
Alcohol has anticoagulant properties and should be consumed with caution if you have TTP. Depending on your platelet count and the progress of your treatment, you might not be able to drink alcohol at all. This should be discussed with your doctor.
Find the type of exercise that suits you
Some physical activities require endurance while others require strength. You can talk to your doctor about which type of physical activity suits you best, but it is generally recommended to avoid sports that carry a risk of injury. Such sports as swimming, hiking, dancing, cycling, golf are usually suitable for people with TTP.
Pay attention to your symptoms
It is important to know your body and be able to recognize the symptoms. Unusual symptoms may indicate that your platelet count, or ADAMT13 activity is falling. It is important to report this to your doctor as soon as possible and not wait for symptoms to worsen, in order to avoid a relapse.
Yoga, meditation and other mind-body practices can be particularly beneficial for people with TTP. They help to ensure communication between your brain and your body. Reducing stress helps the immune system to function better. Getting a good night's sleep also helps to limit stress.
Travel if possible, but make sure you follow some important rules!
Before going on a trip, you should inform your doctor about your intentions to travel. He or she may ask you to undergo some tests like platelet count or an ADAMTS13 activity test to check your health and avoid any risks. It is essential to ensure that you are up-to-date with all the vaccinations for your destination. If you develop a fever, infection or other symptoms, do not hesitate to contact your doctor immediately. Make sure you have your doctor's contact information and all the documentation that explains your illness, symptoms and treatment plan, on you at any time.
Most patients diagnosed with TTP make changes to their diet and lifestyle. It is important to listen to your body and its needs and to avoid fatigue and infections. Do not hesitate to talk to your doctor if you need any advice on your condition, treatment or lifestyle.
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