Member Profiles - Page 1
Simon Fox
Email: Foxhens@aol.com
Location: Goring-on-Thames, Oxon, UK
Birthdate: April 18, 1964
Year of Diagnosis/Onset: 1997
Current Medications: MTX plus Prednisone at present for flare, Folic acid, calcium tablets
Occupation: Publishing Manager, London
Family: Wife, two children, Oliver 8, Emily 10, West Highland White Terrier - Millie
Favorite Activities: All sports (Ha Ha)
Message:
Simon's problems came on gradually starting with we when think back with flu like symptons.
He was given penicillin and had a severe allergic reaction at Christmas 97. He had the night sweats, rash etc.
He recovered but was left with a strange "bent finger". Was referred to a rheumatoligst who did lots of tests
to rule out certain sinister "things" and came up with "Sarcoidosis". Progressed on for about four years with
this diagnosis, he got gradually worsening symptons of joint pain and swelling - mainly in his feet, knees,
wrists but mainly feet. He started with NSAIDS, then onto pred going higher and higher until on 60mg a day.
Kept questioning diagnosis researching on the net but only could find Lupus and RA - nothing seemed to quite "fit".
Consultant kept doing biopsies of the rash, lung X rays etc. Then put onto Azapirone no good - adverse reactions.
Stopped all meds and had a flare. Referred to a Emeritus Prof of Rheumatology at the Brompton Hospital, London.
He then ran load of tests and came up with AOSD. Started on MTX and has done quite well up UNTIL NOW.
Flare started in Feb - bloods tests showed elevated CRP and ESR but nothing actioned - consultants appoint
was postponed. Subsequently sustained substantial flair, saw consultant and currently on 30mg pred to
try and calm things down. Back to consultant this week. Will hopefully have further blood tests and monitor progress.
We wonder why this happened to us as so many of you do too no doubt. Before this thing came out of nowhere
Simon was a very active fit healthy sports mad type of person. We take one day at a time at present.
Heather Ann Fultz
Location: Ithaca, NY
Birthdate: 05-30-1975
Year of Diagnosis/Onset: Diagnosed in February of 2008 with Stills Disease but very ill
since September 2006. Doctor thinks I may have had it longer.
Other diseases/health conditions: Hashimoto's Hypothyroidism
Current Medications: 15 mg prednisone 15 mg of Methotrexate, Folic Acid, 20 mg Lexapro,
25 Mg of Sinthroid (T4 for thyroid) .05 mg cytemel (T3 for thyroid), Cats Claw, Vita C, Flax seed oil,
Fish oil, Milk Thisell, Primrose oil, Calcium with Vita D and magnesium, Muti Vita. B complex.
5-HTP for sleep. Vicodine for pain as needed.
Occupation: Private Nanny for last 5 years. Also part time private housekeeper before getting very ill
Family: Married to very supportive Husband and best friend: Russell Fultz.
Children: Roman 7. Casey 11, and Dustin 15
3 siblings, 2 sisters 1 brother. I am the oldest of the 4
I Love to spend time with family.
Favorite Activities: home decor, Flower gardening, House plants, Scrap booking,
Water aerobics at the YMCA with my buddies, and very into trying to stay pain free!
Message:
I Started with a stiff neck and sore throat, then all over joint pain and high fevers.
2 months later, started rash on neck and chest then started on upper arms. Heart palps then started, weak and unable to work.
I'm now getting relief on prednisone and Methotrexate.
I have a great network of friends on StillsDisease.org
THANK YOU ALL FOR YOUR ON GOING SUPPORT!
–Heather Ann Fultz
Terry Helbraun-Bathurst
(formerly known as Terry Eken)
Email: Tova118t@aol.com
Location: Daytona Beach, Florida USA
Birthdate: November 8, 1958
Year of Diagnosis/Onset: April 2, 1998
Other diseases/health conditions: Fibromayalgia, osteoarthritis, osteoporosis, chronic pancreatitis, asthma, COPD
Surgeries as a result of Still's: None yet!
Current Medications: Prednisone, Methotraxate, Singulair, MSContin, Lortabs, Activel, Xanax, Vitamins
Occupation: Former professional groomer and handler. Currently, a full time student in college and on disability.
Family: Husband, Danny, Children, Robert 26, Amber 24, Jeriel 22 and Little Danny 4
Favorite Activities: Spending quality time with my family. Showing and breeding dogs. Surfing the Internet and playing pogo.com
Susan Matera a/k/a Sue #2
e-mail address: cjlabbe01@snet.net
location: 240 Kenwood Estates
Griswold, CT 06351
Birthday: June 29th
Year of Onset of Stills or diagnosis: I think the
onset started around winter of 1995
Diagnosis: Winter of 2000
Other Health Problems: Fibromyligia
Meds: currently I am taking prednisone,
Zoloft, colchicine, celebrex, antitriptylene
Surgeries due to Stills: I haven't had
any surgeries after being diagnosed, but I
feel that my hysterectomy and 12 bladder
surgeries have triggered off my Stills.
Occupation: I am an owner and partner in
a family business. We own a small shopping
center in Norwich, CT and we have a large
Retail store. I have worked with my father
for 22 years and I wouldn't change it for
anything.
Family: I have two incredible parents,
Joe & Lois. They support me very much
and they are always there for me. I couldn't
be blessed with better parents. I also have
a brother named Michael who lives near me
as well. As for my family..I have three
beautiful boys..Joshua, Zachary and King
Kong...our Great Dane! My boys are very
supportive and understanding of my Stills.
Hobbies: I think when I was younger, I had
more hobbies, and I felt better. I used to
ride horses all the time and grew up with them.
I miss it very much, but my Stills prevents me
from riding. I love to garden or just work in
my yard. The neighborhood calls me
"THE LAWN RANGER". I also like my quiet
times. I like to walk and just enjoy quiet
evenings at home with my children. Sunday
is a "family" day for me and it's my favorite
day of the week.
Caroline Robinson
Email: blacklionent@yahoo.net
Yahoo ID: blacklionent
AOL IM ID: (my husbands, he will reply too) jrobin1962
Location: Medford OR
Birth date: August 8, 1957
Date of Onset: Diagnosed finally with ASOD late October 2001, but suspected onset is much eartlier
Other Health Conditions:
MAJOR: Adult Stills Disease, Diabetes, Diverticuli disease, Fibromyalgia, Krukenburg Spindle Syndrome, Migraines, Necrobiosis Lipoidica, Neuropathy, Empty Cella Syndrome, Splenomengaly, Uterine Fibroids, Valvular Heart Disease
MINOR: Astigmatism, Carpal Tunnel Syndrome, Cat Scratch Fever (resolved), Cytomeglavirus, Disbiosis, Epicondilitis (Tennis Elbow), Epstein Barr Syndrome (Resolved) Fibrocystic Breast Disease, Hyatal Hernia, Kidney / Liver stress, Tendonitis, TMJ.
Persisting Symptoms: Chronic Fatigue, Fevers over 100* daily, daily major headaches, muscle joint and body pain, swollen glands (5 years and counting), difficulty sleeping, crashing endocrine system, and acute environmental sensitivities.
(Boy! THAT was depressing!!! Majority of illnesses diagnosed this year, and in alphabetical order)
Current Medications: Avandia, Prandin, Trazadone, Salsalate, Prednisone, Methotrexate, Homocysteine Balance (which includes B vitamins and 1MG of Folic Acid), Cal Mag Citrate, Vitamin D, and lots of Chinese Medicinal Herbs most would not identify with, but email me and I will give you more information.
Occupation: By trade- Internet Administrator and Marketing Research. Currently unemployed (as of 12/01/01)
Family: Married 02/14/87 to James J Robinson, a wonderful, kind, supportive man. I have 3 birth children. Amber LaShondra - Born 05/04/1977, Evan Gabriel - Born 03/30/84 and Kamari AnNisha - Born 12/29/89. Amber made us Grandparents on 08/01/01 to a baby girl - Macy Jay. She was named after her father, Matthew Jay. (Macy means "from Matthews Estate") I have had 3 foster children in addition to my own, Eric, Amanda and Matthew (different Matthew than the son in law) I have 13 siblings, most of which live in the Eastern part of the country. I was born in WV and raised all over the USA.
Favorite Activities: I like writing, arts and crafts, a good movie or book, music, family time and helping others. I also like photography, and am a makeup artist. (I do faces! *Smile*) I am building a web site called...(oops! Can't tell you, its not ready yet!)
Jennifer Jay
Email: godawgs47@comcast.net
Location: Wilmington Island (Savannah), Georgia
Birthdate: Feb 10, 1971
Year of Diagnosis/Onset: Onset in Sept of 89, Diagnosed in Sept of 90
Other diseases/health conditions: Fibromyalgia, IBS
Surgeries as a result of Still's: Left Hip replacement in 93, 2 Revisions in 98. Right hip needs to be replaced but Im putting it off as long as I can tolerate the pain and keep it under somewhat control with pain meds. I've had terrible luck with every surgery I've had on my hips so Im very hesitant to have another one, although I know eventually it will have to be done
Current Medications: Enbrel, cymbalta for the fibromyalgia pain, Darvocet as needed for pain, bentyl for IBS
Occupation: Army Wife and Nanny for two boys, ages 12 and 14
Family:...Toby our newest puppy he's a dachshund, Gabby our Bassett Hound, and Sierra the cat. We hope to adopt in the next year or two once my husband returns from Iraq and Korea.
Favorite Activities: Being with my husband and my dogs, boating, riding four wheelers, riding horses when I can, college football games-Georgia Bulldogs, walking on the beach, Reading, studying about Wolves, medical research. I'm learning how to play guitar, I love to travel and I watch The Lord of the Rings at least 3-4 times a week as Im a huge fan of the books and the movies.Im considering going back to school for a degree in either europen history, or art history, or literature. I'm reading lots of Dan Brown's books like Davinci Code and /Angels and demons which I loved.
Nicole Pucillo
E-Mail: Graphsfan@hotmail.com
Location: Millis, MA
Birthday: Nov. 14, 1981
Year of onset or diagnosis: Sept. 2001
Other health problems: humm...just this
Medications: None
Surgeries due to stills: Future knee replacements
Occupation:Full time college student studying Marine Biology and Oceanography
Family: I live with my wonderful mom. I also have an amazing and understanding boyfriend.
Hobbies: Walking in the park, spending time with those I love, Lving each day as well as I can, and then there's the things i am working on ...tennis, horesback riding, and scuba diving. (ha ha)
Tom Kufahl
Founder of our Group
Visit Tom's Homepage
Email: tkufahl@charter.net
Location: Wausau, Wisconsin
Date of Onset: Diagnosis is 92 but suspected much earlier
Aaron Nelson
Email: Aaron@arthritisinsight.com
Location: Kalispell MT
Birthdate: 5/3/74
Date of Onset/Diagnosis: April of 84
Surgeries due to Still's: Left Hip tissue release,Right hip replacement, Both knees replaced also many muscle releases. one revision done in Jan of 99 right knee. October 19 2000, Left elbow replacement.
Current Meds: Imuran, Celexa, Cyclobenzaprine, Vicodin.
Family: single
Favorite Activities: Working on my websites, being with friends, Working on my 1966 Ford Mustang
My webpages:
Aaron Nelson - JRA World/Arthritis Insight
Check out my personal website:
The World is getting smaller all the time-
share, live, laugh, learn...you never have to feel alone...
Finicia Murray Compton
Location: Pikeville, Kentucky
Birthdate: 03-02-78
Year of Diagnosis: February of 1998
Other diseases: Avascular Necrosis
Surgeries as a result of still's: Future total knee replacements
Current Medications: Prednisone, Relafen, Plaquinel, Methotrexate,
Ultram, Calcium w/Vitamin D, Vitamin E, Folic Acid.
Occupation: Full-time college student studying to be a Secondary Math
Educator.
Family: I am single. I live with both, my Dad, Finis Compton, and my
mom, Linda Compton, and my sister, Crystal Compton. I have one cat,
Baby. I have a boxer bull dog, Sissy.
Hobbies: Internet, used to love to shop, but my disease has kind of put
a damper on that, love to spend time with friends, love swimming,
sunbathing, relaxing in my jacuzzi, love math.
Email: compton@kymtnnet.org
Richard Schwartz
Email: richard@lsa.co.uk
Location: London, UK
Birthdate: 15/6/54
Year of Diagnosis or Onset: 1991
Other health conditions: None
Surgeries as a result of Still's: splenectomy
Current Medications: prednsilone (5mg a day); azathioprine (100mg a day),
didronel (osteoporosis treatment course); penicillin (250mg 2xday)
Occupation: Financial journalist
Family: Married, 1 son (8), 1 daughter (5), 2 cats
Hobbies or Favorite Activities: When time allows: music
Kathi McDavid
Email: txav8r@flash.net
Location: Keller, Texas...Just north of Fort Worth
Birthdate: Sept 4, 1960
Year of Diagnosis or Onset: 1990
Other diseases/health problems: fibromyalgia, aquagenic pruritis, reynaud's syndrome
Surgeries as a result of Still's: None
Current Medications: prednisone, prozac, claritin, zantac, klonapin, neurontin, ultram, Tylenol Arthritis
Occupation: Was Financial Analyst/Project Manager currently applying for long term disability
Family: Monte is my husband. He is incredibly understanding and supporting of me. We will be married 18 years this July. Brennan is my 13 year old daughter who is really involved in acting and drama. She is fabulous at it. Drew is my 11 year old son who is 100% boy, yet takes the time to make sure his mother doesn't over do it. Ellie is our eight year old golden retriever. I don't know what we would do without her.
Favorite Activities: Spending time with my family and shopping on Ebay!
Amanda Rose Herzog
Email: americk@olg.com
Location: St. Inigoes, Maryland
Birthdate: June 16, 1990
Year of Diagnosis or Onset: February, 1996
Other diseases/health problems: None
Surgeries as a result of Still's: None
Current Medications: Methotrexate, Naprosyn, Folic Acid, Zantac
Occupation: 3rd grade student as of 1999 (end of school year)
Family: two cats, Tiger, Fluffy; one dog, Kato; 4 Birds
MomÊ Tracey Herzog
Hobbies or Favorite Activities:
Reading, Writing, Karate, Piano
Betsy Ashley
Email: ashbet@northnet.org
Location: Norwood.New York
Birthdate: March 24th
Year of Diagnosis or Onset: Onset 1993 diagnosis- March 1999
Other diseases/health problems: None
Surgeries as a result of Still's: None
Current Medications: Celebrex, aspirin ,estrogen, Pepcid
Occupation: Hairdresser for 31 yrs- Beauty shop in my home
Family: Married- husband Ken-postmaster Colton Four children Two daughters Angela and Amy, both married and two sons- Keith and Bob - six beautiful granddaughters and
another grand baby on the way- pets- yes Lisha- a Shihtzu dog, three cats- Tiffany, Peaches and Manna
Favorite Activities: Hobbies are cooking- love new recipes,
crocheting and making teddy bears from old materials such as fur coats and
jackets belonging to relatives. Also we have a RV and enjoy going in that.
Amanda Yee
Email: yee.44@osu.edu
Location: Columbus, OH
Birthdate: 09-17-77
Year of Diagnosis or Onset: 98
Other diseases/health problems: None
Surgeries as a result of Still's: None
Current Medications: None
Occupation: student, activist, consultant and soon to be peace corps
volunteer (i hope)
Family: single, no pets, oldest of five
Hobbies or Favorite Activities: reading, walking, ballet, yoga, painting,
drawing, swimming, and dancing...oh yeah.. and solving world food problems (just kidding)
