Written by Melody Kaminskas, Illinois, USA
My Husband Gary is the last surviving member of his family with X-linked Lymphoproliferative Disease (XLP1). Gary just turned 39 years old on April 14th 2018. He has out lived his half-brother & 3 uncles. His 4th uncle who had XLP1 died at 42 but that was because he wasn't taking care of himself very well.
My husband has changed many habits since I met him 14 years ago. He no longer smokes or drinks. He has cut back on his sugar intake along with fast food and junk food. My Husband does not allow this Illness to hold him back. Gary rides his motorcycle & his bicycle, we hike & backpack and kayaks.
The only cure is a Bone Marrow Transplant, but everyone in the family who has had one has passed away.
Every 4 weeks a nurse administers 15mg of Immunoglobulin (Gamunex-C), Gary has been doing this since he was 8 years old.
We understand that there are not many people above the age of 30 with XLP. If more people hear about XLP and about Gary's story maybe it will give them hope and a better outlook on life.