Primary Immune Deficiency and Dysautonomia – Living With a Rare Disease
Ilana Jacqueline looks like a perfectly healthy young woman, but looks can be deceiving. It took 19 years before she was diagnosed with Primary Immune Deficiency, also called HypoGammGlobulinAnemia. Growing up, she was never able to shake a cold without a trip to the doctor’s, and her friends, relatives, and even her teachers thought she was a hypochondriac. She thought that she was just a weak person. As it turned out, a simple blood test could have changed her life by helping her get an earlier diagnosis.
Yes, I Really Am Sick
After her 20th visit to a specialist, she was diagnosed and began a grueling treatment of IVIG (intravenous immunoglobulin). She began by going to the hospital once a month for infusions, but after a nurse taught her how to administer the treatment herself, Ilana was able to treat at home. During this time, she started her own PR business and juggled infusions and unexpected hospital stays with client meetings.
After moving in with her boyfriend, she was happy but also worried about how she would handle her responsibilities and pay her half of the bills if she kept getting sick and had to stop working. Her boyfriend was supportive, and when that time came, and she was diagnosed with a rare condition called Dysautonomia, which caused headaches, blackouts, and fatigue, her mother pitched in financially.
After finding a doctor who was willing to work with her, symptom by frustrating symptom, Ilana spent months trying to understand her body, and seemed to be on the verge of getting a grip it; but, she discovered one missing medication could send her pulse soaring, and missing an IV treatment might send her to the hospital for a week. She began seeing a therapist to help her cope emotionally.
When Ilana was able to resume working, she knew that she wanted to advocate for people with rare diseases. She started a blog, Let’s Feel Better and became the Managing Editor of the blog at The Global Genes Project –a leading rare disease patient advocacy organization. She maintains an upbeat attitude, and understands that people won’t be educated in one day; that it will take time, and she’s willing to go the distance in helping others.