There are special people in this world who are afflicted with rare diseases. Today we observe RARE DISEASES DAY!!! It’s so frustrating to have an invisible disease, especially when it is misunderstood by most people.
The family is one of nature’s masterpieces. – George Santayana, The Life of Reason
The focus this year is to join for better care. Caring for people living with a rare disease is multi-faceted. Some patients have access to treatment, while other have no treatment options. Some patients are moderately independent while others require intensive physical assistance and equipment.
To understand what is needed for proper patient care is important if we are to help. We will draw awareness through this post. Hopefully after you read this, you will not be ignorant about some of the more rare diseases that folks and their families struggle with on a daily basis.
A rare disease is one that affects 1 in 2000. Over 6,000 rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.
- May involve chronic illness, disability, and often premature death
- Often have no treatment or not very effective treatment
- Are frequently not diagnosed correctly
- Are often very complex
- Are often caused by changes in genes
Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatments. Therein lies the frustration for these patients and their families.
For a database of rare diseases, please click on this link – https://www.rarediseases.org/rare-disease-information/rare-diseases
I have found so much help through the Diabetic Online Community on facebook. It’s my hope that people dealing with rare diseases might meet up with others facing similar challenges through social media. There really is strength in numbers. It helps so much to know you’re not going through a disease process by yourself. I’m also so thankful for information through reputable websites such as WebMD. The symptom checker on there can be so helpful in directing a patient to the proper diagnosis, or at least get you started.
For everyone battling an invisible or rare disease, I want you to know God loves you. He sees what you’re going through and hears every prayer you say. I’m praying for you too. ❤