Top Ten Things I Have Learned About Hyper IGE Syndrome

Our son has had some kind of illness from birth. For years, this illness has had no name or they have attached the word "Idiopathic" in front of whatever they thought he had. This year we have a name! Although this name came with a price, it has been a blessing at the same time. Earlier this year, he had a bone infection in his right tibia that gave him the right to be life flighted to the nearest Children's Hospital. While this was an extremely scary situation, I feel like God surrounded us. We had several opportunities to share God's love, praise and worship through song and be reminded of how strong our son's faith in God is. The name of his illness is called, Hyper IGE Syndrome and here are my top ten of what I have learned abut this disease.

1. This is a rare disease that causes complications with skin, bones, sinuses, teeth and lungs.
2. Another name of this disease is Job’s Disease or Syndrome. Named after Job out of the Bible because of the pustules that Job suffered. (Job 2:7) People suffering from this disease fight long-term skin infections.
3. Our Son is text book for this disease. Everything from birth to current time has been explained with this diagnoses.
4. Studies have shown that it is a Genetic Mutation. Yes, I have now caught myself calling him a Teenage Mutant Ninja Turtle.
5. Did I mention that this is really, really rare?
6. As of this date there is no cure. It is a life long chronic disease. But there is preventative care for the symptoms.
7. A common mnemonic used to remember the symptoms is FATED: coarse or leonine baces, cold staph abscesses, retained primary teeth, increased IgbE, and dermatological problems [eczema]. I know not the most common words unless you have an M.D. behind your name.
8. Antibiotics are very helpful and necessary.
9. There needs to be more research out there because it is so rare, it is hard to find studies.
10. GOD is Not Dead!  He has helped us through these trials many a time and continues to do so. Our son has tremendous faith and God speaks through him to remind me time and time again that God has my back!

Loved sharing the Top Ten with you! And in future posts, I will share our calm waters and storms we have weathered throughout the years with our son's illness.

 If you would like to see others Top Ten post make sure you visit Top Ten Tuesday at Many Little Blessings.