4 steps you should take if you’ve been diagnosed with a rare illness
One of the most life changing things that can happen to any individual is getting a rare disease diagnosis from your doctor. Depending on your prognosis, the financial and emotional strains are enough to lead to other mental complications such as depression, as such diseases affect less than two thousand people within a geographical region.
Numbers like one in two thousand people in Europe and one in two hundred thousand in the United States are enough to discourage anyone that they will live a long and fruitful life. However, one can take bold and decisive steps towards positively living with a rare disease.
1. Find the Best Doctor in your Field
It is imperative that you confirm that the diagnosis is correct. No margin of error should exist within the physician's diagnosis. Patients should make timely appointments with a specialist with ample experience in the field to get the necessary advice. The best way to begin the process of finding your doctor is online on websites such as topdoctors.co.uk/ which guides patients on how to get into contact with a specialist. Once you are in touch with your doctor, present them with the results from your lab work, X-ray, as well as all the symptoms that you have experienced.
2. Learn About Your Condition
One of the easiest steps to take after a confirmed diagnosis is finding out as much as you can about your condition. The internet provides all sorts of information in the form of medical journals with scientific data on most of these diseases as well as providing the patient with a platform to meet other patients with similar conditions and exchange notes as to the course of treatment that they are on. There are websites such as http://www.webmed.com/ that give information into ongoing research as well as experimental therapies. You can also acquire vital information on the insurance required throughout the treatment and come up with an alternative course of action in case the treatment isn’t working.
When it comes to drugs, patients can rest easy. Organisations created to work exclusively in the rare illnesses field provide medical aid for those patients that cannot afford it. A good example of such groups is Rare Disease UK (RDUK) which helps to raise awareness and improve the quality of life of patients/family and The National Organizations for Rare Disorders (NORD), which supports many patients within the United States by helping them get the medication they cannot afford.
4. Join a Support Group.
Patients sometimes feel isolated and lonely since the diseases they suffer from affect only a small number of people worldwide. However, the internet provides a reliable means for patients to connect and talk about their how the treatment they are on is working. The idea that there are other patients suffering from the same disease also provides some comfort which also goes a long way in getting the positive reaction to a prescribed treatment. The fact that patients can maintain their anonymity while participating in these discussions also provides doctors with a means to get straightforward information.