In late November 2017, Jason noticed that the muscles in his legs and lower back seemed sore and fatigued, for no reason that he could explain. Quickly, the fatigue spread to the rest of his body, and by early December he was bed-bound; it was evident that something was going very wrong. After a trip to the ER, a hospital admission, what seemd like a millions blood tests, and a muscle biopsy, Jason was sent home and told to drink lots of fluids and to see a specialist ASAP.
When the muscle fatigue started spreading to his neck and jaw and his breathing felt compromised, Jason went back to the ER and was yet again admitted to the hospital. This time he was given medication to help stop the inflammation.
On December 27th, Jason was dianogosed with a rare autoimmune disease called Dermatomyositis, an inflammatory muscle disease. Affected individuals may experience difficulty in performing certain functions, such as raising their arms and/or climbing stairs or develop speech and swallowing difficulties. Skin abnormalities associated with dermatomyositis often include a distinctive reddish-purple rash (heliotrope rash) on the upper eyelid or across the cheeks and bridge of the nose in a "butterfly" distribution and on the forehead and scalp. In some people with the disorder, involvement of muscles of the neck, tongue, and/or throat may eventually result in difficulties swallowing (dysphagia). In addition, Dermatomyositis often occurs with an underlying cancer.
Jason was prescribed steroids to see if the disease would respond to the drugs. But just a few days later he could no longer swallow even his own saliva and on New Year's Eve he was quickly admitted to the hospital yet again. VERY high doses of Steroids and a treatment called IVIG (intravenous immunoglobulin) were administered.
Because of his inability to swallow, Jason now has a feeding tube that will put "food" directly to his stomach.
Needless to say, this has been a diffiult month for Jason, his wife Lindsay and their two boys. Jason is self-employed and has been unable to work for more than a month now, with no vacation or sick pay to draw from and no real idea on when he will be able to physically handle working again (even sitting up in bed exhausts him). While they have medical insurance that covers a huge part of the fees, the 3 hospital visits happened over the course of 2017/2018, which means two deductibles. In addition, Jason will be leaving the hospital soon, but the doctors have no idea how long he will be in this condition. The goal is for the medications to do their magic and get Jason feeling better, but until then, he will be in bed and will require home care such as physical therapy, occupational therapy, speech therapy, specialized nutrition and nursing assistance.
Any contributions you make will be used directly to support his medical funds so he can begin his road to recovery and not stress about paying for his much-needed medical care.
We feel positive and hopeful for a healthy future for Jason. The family thanks you from the bottom of their heart!
- Lindsay Hester
- Patricia Brumbaugh
- Mary Fisher