Make your own free website on Tripod.com


 

STILL'S DISEASE

Information Survey


The purpose of this survey is to collect information from you about your experiences with Stills Disease. Since this is such a rare disease and very little research has been done on it, we feel those who are suffering with the disease are a wealth of information. Any information collected will be held in the strictest of confidence. At no time will names or medical information be released. This information will be collected for statistical purposes, and these statistics will be published in our newsletter periodically. If there is a question you do not wish to answer or if you do not wish to give your name, that is ok also. This survey is broken up into 3 parts: (1) General Information, (2) Pre-treatment and diagnosis experience (3)Treatment and Life Style changes experience. Thank you very much for your participation in this survey. Jean Clabough RN

This survey is divided into the following sections:

Fill out the information in each section as requested. You may either print out this form and mail it to us, or just press submit at the end of this form. You will receive a confirmation message from us shortly.


SECTION A -- General Information

Check the box that applies, or type in information requested.

  1. Have you been diagnosised with Stills Disease by a doctor?
    Yes No Suspected by doctor Suspected by me

     What is your mailing address? This Information Is Optional.

    Name     
    Street   
    City     
    State    
    Zip Code 
    e-mail   
                                  
  2. What is your age? 0-10 years of age, 11-15 years of age, 16-21 years of age, 22-30 years of age, 31-40 years of age, 41 - 50 years of age, 51 - 60 years of age, 61-70 years of age, 71 + years of age.
  3. Gender: Female, Male
  4. Race/Ethnicity:
    African American or Black
    American Indian or Alaska Native or Native Hawaiian
    Asian, Asian American or Pacific Islander
    Mexican American/Chicano
    Puerto Rican
    White/Caucasian
    Other (Please specify):
  5. If you have more than 1 autoimmune disease, please list them:

  6. Do you have other first degree relatives (mother, father, sibling, aunt, uncle, grandparent, grandchild) with autoimmune disease even in remission? Yes, No.
  7. If you have answered yes to question 6, please list the disease/s and their relationship/s to you.

  8. Current Employment Status:
    Employed
    Retired
    Student
    Disabled
    Not employed but available for work
    Not employed and not available for work
  9. If you work or worked, what was your occupation?

  10. Has your occupation changed as a result of Stills?
    Yes No
    If Yes what was your former occupation?
  11. Has your work/school schedule changed as a result of Stills?Yes No
    If Yes, please indicate how your work schedule has changed?
    Work/School less hours
    Work/School less days or take more days off
    Other (Please specify):
  12. Have you ever been told you have Rosecea?Yes No

Back to Top


SECTION B -- Pre-Treatment & Diagnosis

Check the box that applies, or type in information requested.

  1. What were your initial symptoms?
    Fever
    Rash
    Joint Swelling
    Joint Pain
    Chest Pain or Shortness of breathe when lying back
    Pleurisy
    Sore Throat
    Night or Day Sweats
    Generalized Achiness
    Swollen Lymph Nodes
    Fatigue
    Muscle Weakness
    Abdominal Pain
    Vague feeling of not being well
    Eye pain or irritation
    Lack of appetite
    Hair Loss
  2. How old were you when Stills first started?
  3. Did your first Stills flare follow:
    Surgery
    Viral or bacterial illness such as the flu
    No apparent incident or illness - came out of the blue.
    Stress or traumatic incident
    Other (Please specify):
  4. Answer These Questions if you have Juvenile Rheumatoid Arthritis.
    a.Was it difficult to get a diagnosis? Yes, No.
    b.Were you diagnosised by a: Pediatrician, Family Practice, Rheumatologist
    c. How long did it take to get a correct diagnosis?
    d. If you were incorrectly diagnosed initially, list them:
    e. Before treatment did Still's cause your child to be developmentally delayed?
    Yes No. If yes please specify:

  5. Answer these questions if you have Adult Onset Stills Disease.
    a. Was it difficult to get a diagnosis? Yes, No.
    b. How long did it take to get a correct diagnosis?
    c. If you were incorrectly diagnosed initially, list them:
    d. Was it ever implied by a physician that you were:
    Symptoms In Your Head.
    Chronic Complainer.
    Too Concerned / Obsessed About Your Health.
    Depressed
  6. After your first flare, have you noticed any of the following precedes additional flares:
    Surgery
    Viral or bacterial illness such as the flu
    No apparent incident or illness - came out of the blue.
    Stress or traumatic incident
    Other (Please specify):
  7. How many flares have you had in the last year
    and how long did they last
  8. Before your first flare did you have a hepatitis B vaccination:
    0 - 3 months before
    4 - 6 months before
    7 - 12 months before
    Did not have a hepatitis B vaccination within the year before my first flare.

    Back to Top

SECTION C -- Treatment and Life Style Changes

Check the box that applies, or type in information requested.

  1. What is your status at this time?
    Active Flare or Acute Stage of Stills Disease (Go to question 2)
    Some control with medication - but still have some symptoms(Go to question 2)
    Control/remission with medication without any symptoms(Go to question 3)
    Remission without any medications(Go to question 4)
  2. a.What were your symptoms during the last month? After you answer a & b go to question 5.
    Fever:105+104 - 104.9103 - 103.9102 - 102.9101-101.9100.5-100.9 Low Grade Fever: 99-99.9 100 - 100.5
    Rash
    Joint Swelling
    Joint Pain: KneeHip Shoulder Elbow AnkleWrist Neck Back
    Pericarditis /Pericardial Effusion
    Myocarditis
    Pleurisy/Pleural Effusion
    Sore Throat
    Night or Day Sweats
    Generalized Achiness
    Swollen Lymph Nodes
    Fatigue
    Muscle Weakness
    Abdominal Pain
    Chest Pain
    Vague feeling of not being well
    Eye pain or irritation
    Lack of appetite
    Slow thinking, problems concentrating or forming thoughts.
    Short-term memory loss
    Chronically elevated ESR
    Hair Loss
    b. What is your level of activity?
    active - able to work and play without problems
    active but need to take nap once or twice a day
    Inactive need to rest most of the time but can do own care & prepare meals etc.
    Bedridden but able to do own self care.
    Bedridden - need help with own self care.
  3. a. How Long have you been Controlled with medications After you answer a & b go to question 5.
    b. What is your level of activity?
    active - able to work and play without problems
    active but need to take nap once or twice a day
    Inactive need to rest most of the time but can do own care & prepare meals etc.
    Bedridden but able to do own self care.
    Bedridden - need help with own self care.
  4. a. How long have you been in remission without any symptoms or medication required?
    b. Which of these medications were you on before going into remission and there dosage?
    Aspirin: Dosage How many doses a day
    Plaquenil: Dosage How many doses a day
    Prednisone: Dosage How many doses a day
    Methotrexate: Dosage How many doses a day
    Enbrel: Dosage How many doses a day
    Other med: Dosage How many doses a day
    Other med: Dosage How many doses a day
    Other med: Dosage How many doses a day
    c. What is your level of activity?
    active - able to work and play without problems
    active but need to take nap once or twice a day
    Inactive need to rest most of the time but can do own care & prepare meals etc.
    Bedridden but able to do own self care.
    Bedridden - need help with own self care.
  5. Which of these medications are you currently on if any?
    Aspirin: Dosage How many doses a day
    Plaquenil: Dosage How many doses a day
    Prednisone: Dosage How many doses a day
    Methotrexate: Dosage How many doses a day
    Enbrel: Dosage How many doses a day
    Other med: Dosage How many doses a day
    Other med: Dosage How many doses a day
    Other med: Dosage How many doses a day
  6. If you have had Stills for 2 or more years. Which Season of the year are you more apt to be ill the most:
    Winter
    Spring
    Summer.
    Fall
    Seasons don't seem to make a difference
    If you have had Stills for 2 or more years. Which Season of the year are you more apt to be well the most:
    Winter
    Spring
    Summer.
    Fall
    Seasons don't seem to make a difference
  7. Do you have a hypersensitivity to the sun? Yes, No.
  8. Please enter any additional comments regarding how stills has changed your life.


Back to Top

FORM SUBMISSION

Thank you for taking the time to answer the questions in our survey.

The statistic from this survey will be printed periodically in our Newsletter.

Or Print and Mail to:
International Stills Disease Foundation
PMB 284
P.O. Box 692068
Houston, Tx.  77269-2068
    snail.jpg (2077 bytes) 
Back to Top

 

Jean Clabough RN.
Copyright 1999 International Stills Disease Foundation. All rights reserved.
Revised: May 28, 2002 .
 
"yes" "" "" "" "" "" "" "22-30" "M" "WhiteCaucasian" "explain:" "" "" "" "" "" "" "" "No" "" "Employed" "" "" "" "" "" "Retail Sales" "No" "" "No" "" "" "" "" "No" "fever" "Rash" "" "" "" "" "" "" "" "" "" "" "" "Vaguefeelingofnotbeingwell" "" "LackofAppetite" "" "21" "NoApparentIncidentorIllness-outOfTheBlue" "" "" "" "" "" "" "" "" "" "" "" "Yes" "14 months" "pitiriasis roscea (due to the initial rash)" "" "" "" "" "" "" "" "" "" "" "1" "3 months" "didnothave" "" "" "" "Control/remissionwithMedications noSymptoms" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "7-8 months" "Active-abletoWork&PlayNoProblem" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "200" "2" "5-10" "1" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "Submit Form" "-" "Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; Win 9x 4.90)" "24 Dec 2001" "11:53:39" "yes" "" "" "" "" "" "cindys@fidnet.com" "41-50" "F" "WhiteCaucasian" "explain:" "" "" "" "" "" "" "" "Yes" "2 sisters with fibromyalgia, maternal aunt with rheumatoid arthritis, brother with crohn's disease" "Employed" "" "" "" "" "" "secretary" "No" "" "No" "" "" "" "" "No" "fever" "Rash" "Joint Swelling" "Joint pain" "" "" "SoreThroat" "DayorNightSweats" "GeneralAchiness" "" "Fatigue" "Muscleweakness" "" "" "" "" "" "40" "NoApparentIncidentorIllness-outOfTheBlue" "" "" "" "" "" "" "" "" "" "" "" "Yes" "6 weeks" "" "" "" "" "" "" "" "" "" "" "" "" "" "didnothave" "" "" "" "SomeControlwithMedication-stillsymptoms" "" "" "" "" "" "" "" "" "" "" "" "" "" "Rash" "Joint Swelling" "Joint pain" "WristPain" "" "" "" "" "" "" "" "" "" "" "SoreThroat" "" "General Achiness" "" "Fatigue" "" "" "" "" "" "" "SlowthinkingProblemsConcentratingorFormingThoughts" "" "" "hairloss" "Active-ableToWorkandPlaywithoutProblem" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "2.5mg" "2" "10mg" "once a week" "25mg" "twice a week" "alleve" "220mg" "2" "arava" "20mg" "1" "" "" "" "nodifferenceworst" "" "" "" "" "nodifferencebest" "" "" "" "" "Yes" "I have learned to avoid situations or people that tend to make me stressed. I am trying to continue to work so I don't focus on my disease as much." "Submit Form" "-" "Mozilla/4.0 (compatible; MSIE 5.5; Windows 98; Win 9x 4.90)" "09 Mar 2002" "10:01:14" "yes" "Joseph S Andersen" "2400 Apple St." "Pekin" "IL" "61554" "Joescruff@hotmail.com" "22-30" "" "WhiteCaucasian" "explain:" "" "" "" "" "" "" "" "No" "" "Employed" "" "" "" "" "" "Sales" "No" "" "No" "" "" "" "" "" "fever" "Rash" "Joint Swelling" "Joint pain" "CP or SOB when lying back" "" "SoreThroat" "DayorNightSweats" "GeneralAchiness" "" "Fatigue" "Muscleweakness" "" "" "" "" "" "24" "ViralorBacterialIllness" "" "" "" "" "" "Yes" "Pediatrician" " 1 month " "The Doctors didn't know what to think. Everyone was talking about me in the hospital. I had all kinds of tests run on me. Even an HIV test. They took so much blood for testing they had to give me more blood. I had a central line but in too." "" "" "" "" "" "" "" "" "" "" "" "" "" "" "nope " "none " "" "didnothave" "" "" "" "Control/remissionwithMedications noSymptoms" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "Almost a year " "Active-abletoWork&PlayNoProblem" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "" "7.5mg " "once a week " "" "" "folic acid " "1mg" "one dose a day" "" "" "" "" "" "" "nodifferenceworst" "" "" "" "" "nodifferencebest" "" "" "" "" "Yes" "I just can't stay out in the sun for very long becasue of the Methotrxate I'm on. I have no Stills Disease symptoms because of the Methotrexate. Its like I don't even have Stills. Well execpt for the blood tests I go and get everyother month. I was on Prednisone at first. 80mg a day!!!!! Please send me any info on this sucky ass disease. When is someone going to find a cure ? Is any funding avilable to help find a cure??" "Submit Form" "-" "Mozilla/5.0 (Windows; U; Win98; en-US; rv:0.9.4) Gecko/20011128 Netscape6/6.2.1" "28 May 2002" "01:45:59"