Meet the Member
by Melanie Bassett

• Amy Van Der Kamp
• Pamela Frogale

Amy Van Der Kamp

Amy Van Der Kamp is an active volunteer with DINET, and she joined in July 2005. Amy is involved in fundraising, and she is currently packaging and mailing t-shirt orders to raise money for the upcoming documentary. Thank You, Amy, from all of us! (I bought a t-shirt for my physician, who promised to wear it. A reminder to myself: write a check for the documentary and cross your fingers it doesn't bounce!)

Amy is 28 years old, and lives in a small town in Iowa with her husband of 8 years, Mark, and her 5-year-old son, Blake. They have a beagle named “Buddie” and a 29-pound cat named “Elliot,” who is also referred to as “Fatty.” :)

Amy's hobbies include photography, scrapbooking and camping. She has had to slow down in her occupation as a community manager and photographer due to recent health setbacks.

You may also know Amy by her forum username, AJVDK, which has us all curious as to the meaning. However Amy says the name does not have special significance to her. Names that do hold significance with her include Snowpea and Snowball. When Amy was growing up, her group of friends was nicknamed “the peas.” Each of them was given a “pea” nickname by the others in the group. “Snowpea” was Amy’s special name. She was also nicknamed Snowball as a little girl because her skin was so fair.

When asked about her favorite childhood memory, Amy replied, “I always loved tubing down the Iowa River and camping on sandbars with my family. We had so much fun.”

Amy was diagnosed with neurally mediated syncope in May 2001, postural orthostatic tachycardia syndrome in July 2005, low blood volume in October 2005, rapid blood flow in October 2005 and Lyme disease just this year. She had a pacemaker inserted in July 2004, and she has been told that she has supraventricular tachycardia. She has been ill since 1998.

I had planned to feature Amy in the winter 2007 newsletter, however at that time she was hospitalized due to sepsis. She has had sepsis three times. She also deals daily with migraines and joint pain.

I want to commend Amy on her positive attitude. Her character and inner strength shine through when she posts on the forum. These qualities also show in a statement Amy recently made: “The big thing I would love to say is never give up, and always keep fighting! Don't let dysautonomia take over your life; show dysautonomia how you are going to live your life!”

Her mother, who is battling cancer, inspires Amy. She is happy to report that so far her mother is winning the battle.

I took the following from Amy’s profile page on the forum. I hope you feel as inspired by it as I did:
*Never Give up HOPE!*
Life is not measured by the number of breaths we take, but by the number of moments that take our breath away!
This is LIFE, this isn't a dress Rehearsal!

Pamela Frogale

Pamela Frogale has been a member of DINET since September 2003 and helps us from Virginia. Pamela's forum user name is spelled Pamyla. Her nickname is Pam. We all thank you for designing our newsletters! You do a wonderful job.

With diagnoses of POTS, NMH, Lyme disease, Babesia, Rocky Mountain Spotted Fever, and Reactive Arthritis, I was amazed that Pam was able to respond to my email. Much to my surprise, she also has a job!

Over the years, Pam has been diagnosed with many other disorders as well, such as Chronic Fatigue Syndrome and Ehlers-Danlos syndrome (EDS). Her one regret is that she never pursued confirmation of the EDS diagnosis, which was incorrect. It took 8 years to for her to be correctly diagnosed with Lyme disease. For the last year and a half she has been in treatment for tick borne illnesses. The treatment is often difficult, but she has seen improvement. :)

Pam is a believer in searching for answers to the origin of your dysautonomia in order to see if you find a treatable cause.

Pam has been ill about 10 years. She was 23 when she had a bad bout of bronchitis, which was triggered by swimming in a public lake that had a sewage spill. A few months later she experienced horrible fatigue. She was lightheaded and her heart rate “went crazy.” One morning it literally took her an hour to crawl to the bathroom. That was the first day she called in sick to work. For 2 years she was unable to return to any kind of employment. However, Pam slowly improved, and she is now working as a Human Factors Psychologist/Usability Engineer. While Pam is not a programmer, she does design software and web site interfaces. She is usually the person who works with the users of the software to try and understand their needs and translate into a user-friendly design. (Oh thank-you Pam…we need more of you)

Her family consists of her husband, Craig and a very lively Boston Terrier named Oscar. Pam's hobbies include reading, yoga, crocheting, and above all she loves the beach. (Ahhhh, the beach. As I sit here in Wisconsin, I am envious).

When asked about her favorite childhood memory, many memories came to Pam’s mind. Going to the beach with friends stands out. She remembers being in about 4th grade and her parents allowed her, for the first time, to go on a trip without them. She went with her friend’s family to the beach. They had the best time boogie boarding and hanging out on the boardwalk.

Pam's grandmother, who put herself through nursing school, has always been Pam’s inspiration. Though her grandmother has gone through adversity, she always retained a positive attitude toward life. Pam thinks each of us has potential to do great things, and she is sometimes amazed at what any one person can do.

Pam has always considered herself a spiritual person. She has recently become much more involved in church. She finds inspiration in the church community, watching people better themselves and helping others.

You, Pam, are an inspiration to us; look at all that you do. We are “amazed.”

Does your place of business or family give to charity? If so, please let them know about the Dysautonomia Information Network, www.dinet.org. DINET is completely funded by member's donations and can't exist without them. Thank you!

Dysautonomia News is a quarterly publication of the Dysautonomia Information Network.
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