• Be well hydrated on daily basis with water, fresh juices and beverages especially during summer time.
• Do not swim even if you feel slightly tired Shield yourself in order to feel better tomorrow!
• The last time that you consumed alcohol, did you suffer from acute pain? Next time have fun by drinking a non-alcoholic beverage, preferably fruit based.
• Your friend wants to go hiking in the mountain with you. Do you feel concerned that the altitude will make you feel uncomfortable? You should rather choose a lower altitude area to spend the night.
• You’re not allowed to do scuba diving. The reason for this is that your body is facing increased under-water pressure, hypoxia, physical exertion and dehydration, a very dangerous combination for your health condition.
• Excessive heat and humidity bother you. Preferably stay at home during those days. Also air conditioning is a great help in that time.
• As you grow older, you learn to accept and love yourself and you feel the disease getting more intense, the need to take care of yourself also intensifies. You shouldn’t defy the disease but, to embrace it. Love is the cure. And above all, the love for ourselves!
• You always argue with your mom and she doesn’t let you do anything. Why she doesn’t understand that you don’t want to differ from other people? Next time, discuss calmly together about your boundaries and she will trust you not to exceed them!
• When you were a teenager they informed you about the possibility to get admitted to higher education through favorable arrangements due to your condition. Also, about the substitution of military service that may have caused to you more health problems.
• Now that you grew older, it’s time to find out what applies for you in employment, insurance, tax, retirement and other subjects that you’re entitled to.
• Career guidance is a matter of particular significance for you. That’s why you need a job that, besides remuneration, will complement you and encourage you to overcome mental and physical fatigue without stressing your health.
• Welcome autumn! Vaccination season!
• “Tomorrow is my doctor’s appointment for the regular health screening.
Yesterday, during exchange transfusion, I had a very interesting talk with another patient. Eventually, time passed by very quickly and more pleasantly.”
• When it’s too cold outside, you should dress warmly in order to shield yourself. However if you are heated-up you should remove some clothing.
• Sometimes your friends jokingly refer to you as germaphobic. . It’s okay because it’s a joke. In any case, during the COVID-19 era, disinfection and hand sanitizing is a good habit.
• When you feel sore, a gentle massage may be good and beneficial for you. It makes you feel relaxed.
• Very often the use of relaxation techniques, such as deep inhales and exhales, therapeutic visualization, simple yoga exercises, walking in nature, may relax you, motivate you, increase your energy levels and blood circulation and reduce the stress hormones.
• When you feel sore, drinking a warm decoction of chamomile or any herbal beverage can help you feel calm because if you’re not feeling calm and relaxed the pain becomes worse. Other patients tend to use warm compresses and relaxing breathing exercises.
• During acute pain make sure that you have the appropriate analgesic regime and in case that the pain doesn’t subside, call your doctor and if needed get to the hospital in time.
• During breathlessness, extreme tiredness or unprecented discomfort, you should call your doctor.
• “When in pain, it helps me to do something pleasant (watch a movie, listen to music etc). This way, I forget that I’m in pain for a while.”
• “When I feel that the pain is about to start, I take a small quantity of L-glutamine because from what I’ve seen, it helps me during acute pain.”
• Another patient takes hydroxyurea and doesn’t suffer from the pain anymore. I will discuss with my doctor about this method.”
• “Now that I’m pregnant, the collaboration between my hematologist and my gynecologist is essential in order to make things work for me but also for my baby.
I keep a personal record containing the examinations, hospitalizations and medicine that I take and also every medical intervention. It’s very helpful for every doctor that sees me and doesn’t have immediate access to my medical file.
In order to organize my regular monitoring I choose a well-organized SCA Unit that is connected to a general hospital. Such units are located in Athens but in other cities also.”
• You should not forget getting informed by our association regarding the developments related to the disease, the new treatments and the benefits but also about our routine.
• Having the support of your family and friends, through thick and thin, you can overcome the boundaries of the disease and bring out the best in you.
• Sometimes you may be in emotional distress. Problems that derive from the diseases’ consequences and other external factors get fed back and enlarged and eventually we may not have the power to deal with them by ourselves. At that time, the best solution is to seek help from a mental health professional. Furthermore, many psychotherapeutic approaches may help you manage more efficiently the negative feelings about yourself (stress, fears etc.) and sickle cell disease consequences in your everyday life. Besides, inner peace contributes to our wellbeing, vitality and balances our mental and physical health.
Choose to live a life without fear and stress because that’s what weakens your immune system and may also provoke more problems to your health.
Choose to be optimistic and foster in yourself positive vibes of love, gratitude, joy, pleasure and hope because this way you will feel wellness, vitality and mental clarity. Optimism also eliminates stress and sadness and contributes to a better health condition and less painful episodes.