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After a Parry- Romberg Syndrome diagnose, multiple sensations are accumulated in the patient and his/her family. Romberg is, many times, a misunderstood disease which reason or nature is unknown. That lack of knowledge has driven to many patients to hide behind the lots of pathologies and their suffering, instead of trying to explain their misunderstood disease to their family and friends, which in most of the cases guides to a no-way out path.
Due to the great quantity and variety of symptoms, one can be required to visit many specialists. To work with many different doctors can be exhausting, and the monthly calendar of activities becomes into a long agenda of medic consultations that is progressively increasing.
The Romberg’s development, since the early symptoms appear, until the phase when you learn how to live and be adapted to have it, can be a challenging and demanding experience.
The lack of guidance and changes that are attributed to the disease, can drive you into a depression. Your dear beings can also suffer depression related to your illness.
With them, you can face difficult challenges, you can choose to keep the hope and a positive attitude. The feelings of desperation and frustration are valid, but you need not to be submitted to them. Your friends, maybe, will not understand your lack of sociability and can feel anger and frustration. Communication is a good and essential ingredient for you to take a more active self-care of your own health. Each patient individually faces the disease process in a unique and proper manner, learning to live and adapt by his/her own way.
Parry-Romberg Syndrome is usually difficult to diagnose due to being a “minority or rare disease”. You can be several years without knowing the real nature of your disease. In the initial stages of the Parry-Romberg you can be under many tests and treatments, strolling from doctors to hospitals. If there is not a close and rapid diagnose you can feel out of control, amazed and destroyed, knowing that the changes that are happening to your body are not able to be diagnosed. When the Parry-Romberg is finally detected, there is a relief for the uncertainty, but the frustration can remain because the treatment is symptomatic and there is not a reliable cure.
At some levels you can face losses, limitations and changes. You can feel that your body is against yourself, and the looks and questions from other people can increase your anxiety, because you are not ready to answer them.
On the personal, social or professional levels you can experience a change in the relationship with those you love. With these changes and questions, it is not strange to suffer crisis of identity and feelings of low self-esteem. There can be a lot of other emotions, some new, and some that you have previously experienced. It is important to be aware that these feelings are a natural reaction against the disease, and can be felt in several levels during its development.
It is necessary to realize that some changes must be done in your level and way of life. To realize that your capabilities are different from the time before the illness, that is not the same than surrender. There must be an “adaptation” to the disease. This process and the accompanying emotions must not suggest feelings tending to: love, joy, and hope are to be excluded from your life. Once that the disorientation, depression and rage feelings are over, it is vital to accept your illness. “To accept” does not mean to give up the fight, it is just to realize that it is only a part of your life.
With the appearance of associations, (like the Romberg´s Connection or Romberg´s Foundation) patients and relatives can work together arousing the people from their village about the problems and necessities of the Parry- Romberg affected persons.
Publishing articles from these patients, portraying the meaning of trying to live a “normal” life, adapting oneself to live with a chronic disease, makes that each single effort “opens a door” for other patient.
We have to keep always the “hope” and go on fighting….!!!, maybe you must rest, but never surrender !!!
Feel free to leave a message for Juan Carlos at firstname.lastname@example.org
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