Thursday, February 28, 2019

Living with Rare Diseases: My Story

For those who may not know my story, I have been diagnosed with six rare diseases over the past few years. I have several autoimmune diseases as well. This isn't uncommon. Once your body starts attacking itself, it doesn't seem to know when or how to stop. None of the diseases are curable but the symptoms are manageable with various medications and therapies.

My Six Rare Diseases:

Common Variable Immune Deficiency means my body does not create enough immunoglobulin, which is an antibody created in our blood. Because my body can't create these antibodies, I am extremely prone to infections and viruses.

Idiopathic Intracranial Hypertension is characterized by an increased pressure in the skull due to increased fluid. The cause is unknown.

Stiff Person Syndrome is a neurological disorder that causes extreme muscle stiffness and very intense, painful muscle spasms.

Gastroparesis is essentially paralysis of the gastric system, which means that the muscles do not properly contract in order to aid with the digestion of food.

Dermatomyositis is a disease that causes skin rashes and muscle weakness and atrophy.

Addison's Disease, also known as Adrenal Insufficiency, is a disease that occurs when your adrenal gland can no longer produce enough of the hormone Cortisol.

I have good days and bad days. On bad days, I have trouble simply walking. I always experience pain, to some degree, every day. These diseases interfere with my daily life activities. While the diseases have slowed me down, they have taught me to be still, to listen to God, to depend upon Him completely, to look for His blessings, and to choose joy. I trust that my Papa God is fighting my battles for me while I bask in His presence. To Him be all of the glory, honor, and praise for He alone is worthy!