Southern Belles from Savannah
I had the pleasure of dining with 3 CVID patients in Savannah last week. We talked up a storm. It is always enlightening to meet patients and share stories. Gini Lea, Mandy and Jen made me feel like I talk in slow speed being from the north. We had lots of fun and lots of laughs.
Gini Lea is an honors biology teacher. She has remarkable strength and intelligence. She has fought many health battles, including loss of hair, only to keep bouncing back like the everready bunny. Whenever she was younger, she was on treatment, then stopped, then started again. She finally entered a clinical trial for Vivaglobin, and has been doing Sub Q ever since.
Mandy is the mother of 2 boys, 5 and 9 years old. Mandy has been sick since she was around 6 years old. She was in and out of hospitals about once a month as a child. She started IV’s when she was 8 yrs old. She is very excited that she finally started Sub Q about 5 weeks ago and claims “I love it, I would never go back”. She happily admits that she no longer has that last week before the IV when she always got sick. Now that she is doing Sub Q, she “just wants to get up and GO”!
Jennifer has a 7 yr old daughter. Jen was diagnosed at 3 yrs of age. She started with IM shots, and began IV when she was 7. She has battled pneumonia so many times, that she had to have a lobectomy a few years ago from multiple bacterial infections. She currently does monthly IVig, but is considering switching to Sub Q.
The lovely ladies from Savannah are pictured from left to right:
Jen, Mandy, Gini Lea and the gremlin peeking from behind is me.
Living with PIDD from Birth
ENERGETIC EMILY
You realize Emily is one of the most amazing young ladies you’ve ever met as part of the first impression she makes. After learning that she has been living with PIDD all of her life, you wonder how she manages to be so - so EMILY! After spending the first 5 years of her life fighting for a diagnosis, visits with 3 pediatricians, suffering through multiple upper respiratory illnesses and pneumonias, having her mom accused of needing to see a shrink, Emily was finally diagnosed with CVID (Common Variable Immune Deficiency) by Dr. Mel Berger in Cleveland, Ohio.
Emily began receiving IVig once a month, and continued with that treatment until 2002, when she was entered into a study with Dr Berger. This study was for an entirely different route of administration of IV than Emily was used to. Emily hated her monthly infusions, but she also did not care for change in her life.
Luckily for Emily, her mom is a nurse who could easily give her the SUBCUTANEOUS, or under the skin, infusions of immune globulin (SCig) that were part of this study.
But when Emily was 13, she wanted to be more independent, and began self admistering her Sub Q. Emily feels very strongly about the freedom this method gave to her. She would not be able to have the level of involvement in all of the activities if still tethered to her IVig.
It’s time to list some of these activities, but be prepared to be bone tired by the end of this list. The majority of HEALTHY people are not this active. Emily is a 15 year old senior in high school this year, able to keep her grades up (as in all A’s and B’s) while participating for the 4th year on the swim team; First Vice President of the Kentucky Latin Club; loving AP BIOLOGY; editor of the school newspaper; and a Kentucky Governor’s Scholar. Emily spent 5 weeks this past summer at Bellarmine University on a governor’s scholarship and was able to learn and participate in both scholastic and athletic activities that she would not have been able to if she were sick. Luckily, she was able to do her Sub Q with Vivaglobin every 5 days with no problems, stay healthy and have “the best 5 weeks of my entire life”.
Senior year has been a bit stressful thus far, so it’s important for Emily to stay healthy and find the balance she needs. This is a constant challenge for one so motivated. She needs to face up to fatigue, take the time to rest, and slow down when she feels a bug coming on.
Emily is a self-confessed “germaphobe”, constantly washing her hands, diligent about avoiding bugs, not dining out and deploying many other ‘tricks’ PIDD patients have to try and stay well.
Emily is a very poised, charming and talented young woman who will most definately do something worthwhile with her life. There is no doubt upon meeting her that she will achieve her goals.
Her next goal, which is to attend the college of her choice, will prove to be both exhilarating and exhausting for this young PIDD patient.
Let’s wish her luck.
