I first met Mandy several years ago at an IDF Conference. Of course, Mandy was in her LBD (Little Black Dress) for the evening events. I’ve always remembered her because she looked so perfectly comfortable and lovely in her LBD.
However, things have changed in Mandy’s life and now, the LBD is tucked away in her closet. She has had to find space for roomier clothing.
A New Jersey girl, with an impressive resume – she was diagnosed with PI at age 23 (after years of frequent, severe, resistant infections, unusual bacteria and hospitalizations). Mandy was finally tested for Primary Immune Deficiency – (even though she had never heard of this disease before), and one evening she received the phone call from her Dr with her diagnosis. Mandy remembers it vividly – it actually felt like it was her own reality TV. Then, the battle with her insurance company for treatment began. It took nearly 18 months ( plus a battle with the Department of Health and Human Services) to get approved for treatment with IVig.
Mandy is a Board Certified Behavior Analyst- currently engaged in home programming and private consulting. Her background is in Special Education, Educational Administration and Applied Behavior Analysis. She previously worked in out-of-district placement schools for students with autism for about 15 years. Several years ago, she made the decision to branch out on her own to better manage both her illness and her schedule.
Once Nugget (current name for baby on the way) arrives (which is VERY soon), Mandy plans to continue working – as she works through this fluctuating and unpredictable pandemic and whatever the ‘new normal’ looks like. She never planned on having her baby during an active pandemic. in fact- her plan right now- is NO PLAN. Once her baby arrives -“we’ll be OK”. 🥰
Mandy has a laundry list of comorbidities accompanying her Primary Immunodeficiency. They include: multiple autoimmune diseases (which is very common with this disease), GI issues- including a gastric pacemaker, ulcerative colitis, diverticulitis, asthma, DVTs, clots, ad nauseum. (one thing PI is famous for – is allowing the patient to meet just about all types of specialists).
Mandy shares the lessons she has learned from living with PI: Knowing her limits, balance, perspective, compromise,expect the unexpected and let go all things you have no control over. Remember that quite often, ‘when it rains, it pours’.
One of the things she is most grateful for is the sense of community in the PI world. It is unlike any other- it goes beyond a community and there really is a family. Mandy feels beyond grateful and blessed that this is the disease community she ended up in – the PI community. It truly is like a family- her Zebra family.
Before Mandy could begin her journey to pregnancy- she needed to get clearance from ALL of her most relevant specialists. She has a whole new level of trust in them, and in the medical field as a whole. She feels they are equally invested in having her baby arrive safely and healthy. With quite a few close friends, and her Mom close by- she feels secure that she has formed a terrific group to help her just in case she needs back-up. Her biggest hope for Nugget is for her to be happy. Mandy views herself as a strong, independent female and having a girl, especially as a single Mom, she is hoping to raise her daughter as one as well. Mandy claims that Nugget is already a tough cookie, like her mama- and has joked that she might actually be born wearing a super hero cape.
Authors note: – knowing Mandy- I’m sure that her dreams will be fulfilled. Nugget just might be born wearing this cape.
And, it’s true- we have the best community (family).
Hugs to you Mandy- and Godspeed.