MARFAN SYNDROME SURVEY

Site hosted by Angelfire.com: Build your free website today!

MARFAN SYNDROME SURVEY

WRITE THE QUESTION # EACH RESPONSE PERTAINS TO.
All names and e-mail addresses are confidential, only general demographic information totals will be researched.

NO NAMES WILL EVER BE REVEALED. No one will get your e-mail address or other personal information from us. All such information is understood to be totally confidential.

This English version is sent to respondents in Canada, USA, New Zealand, Australia, England, Ireland, and other English-speaking countries. The main purpose is to compile and categorize related information concerning Marfan Syndrome from sources around the world.

There are actually four different surveys below: "GENERAL", "WELL-BEING", "CHILDREN", "ADULT FEMALE", and "ADULT MALE" Each respondent is asked to at least complete the first two: GENERAL and WELL-BEING

In addition to those, please choose ONE additional category from the remaining three sections: CHILDREN, ADULT MALE, or ADULT FEMALE. Hopefully you will then have responded to a total of three. Like in all things in life, all people are not effected the same in all situations. Some questions will have nothing to do with you at all. Some people do not have severe symptoms, others do. Some are mildly effected, others are more seriously effected. Please give answers to all the questions in each section that you choose. If a particular question does not apply to you, then say something to indicate that fact (ie, does not apply to me, N/A, etc.) Otherwise, we don't know why you chose not to answer and we will assume that you forgot.

Topics Include:

- Area doctors that effectively treat MARFAN SYNDROME patients
- Insurance benefits, tips, costs, qualifications, etc.
- Comparable symptoms relating to each type/stage of MARFAN SYNDROME
- Comparative information common to each age, gender, race, region
- Individual cases histories, poems, stories, etc.

TAKE ALL THE TIME YOU NEED TO ANSWER,
EVEN IF IT TAKES A COUPLE OF DAYS TO THINK ABOUT IT.

****************************************************************************************

GENERAL QUESTIONS

QUESTION #211: What level of Marfan do you have?

QUESTION #212: What is your age and gender?

QUESTION #213: How long ago were you diagnosed?

QUESTION #214: Do you have family members or past relatives with Marfan?

QUESTION #215: How did you find your current doctor?

QUESTION #216: Approximately what age is your doctor?

QUESTION #217a: What medical specialty does your doctor practice? (ie, Genealogist, Dermatologist, Oncologist, Rheumatologist, Internal Medicine, etc.)

QUESTION #217b: Is your doctor independent or does he/she work for the state or government?

QUESTION #217c: Is your doctor licensed to perform surgery?

QUESTION #217d: Does your doctor believe in herbal or alternative remedies, other than prescription pharmaceuticals?

QUESTION #218a: Is your doctor a Chiropractor or in a practice not officially certified as a licensed medical physician?

QUESTION #218b: Is your doctor experienced with Marfan patients? Does he/she have other Marfan patients now? (approximately how many?)

QUESTION #219: What treatment has been suggested?

QUESTION #220: Does your doctor listen to you? (actively listen)

QUESTION #221: Do you find yourself frustrated by the inability to do certain things?

QUESTION #222: Do you try to compensate for them or do you accept the limitations?

QUESTION #223: If your main symptoms are internal (non-visible), do you feel people think your complaints are "all in your head" or "overly exaggerated"? (psychosomatic)

QUESTION #224: Do you find yourself blaming shortcomings in other parts of your life on you Marfan Syndrome related symptoms?

QUESTION #225: If you've acquired a support system in your life (family, church, temple, co-workers, schoolmates, therapist, etc.), do you use their understanding of your condition to your benefit for matters of your life unrelated to Marfan Syndrome? (be honest)

QUESTION #226: Most people do not know of, or fully understand, what effects Marfan Syndrome has on daily a person's daily life. Do you realize this fact and allow for their ignorance? Do you get angry at people for not believing you're in pain or periodically challenged in physical functions?

QUESTION #227: How many times have you been used TPN (tubal feeding) or other forms of medically supplied aid? How does this make you feel?

QUESTION #228: Are you weighing the effects of Marfan Syndrome in your life when considering child-bearing, career change, parental authority, working relationships?

QUESTION #229: If you live in a country without socialized medical coverage, what type of insurance have you found favorable for related expenses?

QUESTION #230: If you have an HMO, or limited coverage policy, do you find the medical treatment adequate?

QUESTION #231: If residing in the United States, do you have Social Security benefit coverage?

QUESTION #233: If you do have SSI benefits, did it take an attorney to help you acquire it, or did you file on your own?

QUESTION #234: Are you classified as "handicapped"?

QUESTION #235: If you have an HMO, or limited coverage policy, do you find the medical treatment you receive adequate to treat Marfan Syndrome symptoms?

QUESTION #236: What country do you live in?

QUESTION #237: Does your country offer socialized medicine to pay for your treatment?

QUESTION #238: What ethnicity are you? (what country were your ancestors born?)

QUESTION #240: Do you live in an urban or rural area?

QUESTION #241: Were your parents young or middle-aged when you were born?

QUESTION #242: Do you think that, per capita in your area, the number of Marfan Syndrome-effected people are average per global statistics; below average; or above-average, in relation to the whole world?

QUESTION #243: Is there an MARFAN SYNDROME Foundation or Marfan Syndrome Group in your area?

QUESTION #244: Have you ever heard of an alternative medication or herbal treatment that has been proven effective for treatment?

QUESTION #245: Have you ever had surgery due to Marfan Syndrome-related symptoms? If yes, what was it?

QUESTION #246: What is the strongest BENEFIT of Marfan Syndrome?

QUESTION #247: What is the biggest DRAWBACK to Marfan Syndrome?

QUESTION #248:

WELL-BEING

QUESTION #411: Do you feel hopeful about your "quality of life" pertaining to Marfan Syndrome?

QUESTION #412: Do you feel that you have viable support systems in place? (medical, family, therapy, religios groups, pain management, etc.)

QUESTION #413: What emotional effects have you found relating to Marfan Syndrome?

QUESTION #414: Do you feel it has an effect on your family, friends, etc., or others beside yourself? In what way?

QUESTION #415: Do you find yourself "blaming" others for your condition? (parents, ancestors, doctors, etc.)

QUESTION #416: Do you feel inferior to others because of physical markings? (bruises, translucent skin, hyperextended bones, visible blood vessels, etc.)

QUESTION #417: Do you to find other ways to acquire self-worth?

QUESTION #418: Do you believe in God?

QUESTION #419: Do you consider yourself unlucky or failing because of Marfan Syndrome?

QUESTION #420: Do you blame your parents for Marfan Syndrome?

QUESTION #421: Do it effect the way you think about society?

QUESTION #422: Are you a good person?

QUESTION #423: Can you recommend a book or article that you feel would help others?

QUESTION #424 Do you personally feel you've become more spiritual because of having Marfan Syndrome?

QUESTION #425: Do you take medications for Marfan Syndrome-related symptoms?

QUESTION #426: Do you find forms of treatment, other than medications, helpful in easing symptom severity? (Yoga, hot baths, herbs, calcium, vitamins, hypnotism, Chi Gong, etc.)

QUESTION #427: Have you heard of treatments for conditions similar to yours (Marfans Disorder, etc.) that may also have positive effects on your symptoms?

QUESTION #428: Do you think there's a reason why you were chosen to have this Marfan Syndrome?

QUESTION #429: Do you know what causes it?

QUESTION #430: Which do you consider to be the MOST difficult to experience - PHYSICAL, EMOTIONAL, SPIRITUAL, or MENTAL effects of Marfan Syndrome?

QUESTION #431: Do you think there are places in the world where Marfan Syndrome is routinely misdiagnosed because of medical ignorance or inadequate medical care?

QUESTION #432: Do you believe there is a perception in the world that Marfan Syndrome can be personally conquered, like a phobia or a bad mood?

QUESTION #433: Do you find yourself sad more often than happy?

QUESTION #434: Do you truly believe sometime in the future, someone will discover a way to correct the gene that tends to lead toward Marfan Syndrome - either prior to conception or during gestation within the womb?

CHILDREN'S

QUESTION #1: What level/grade are you in school?

QUESTION #2: Do you feel Marfan Syndrome has effected your life dramatically? How?

QUESTION #3: Do you think your parents understand what it's like to have it?

QUESTION #4: Do you have brothers or sisters?

QUESTION #5: If yes, do any of your brothers or sisters have it?

QUESTION #6: Do you think your teachers understand what Marfan Syndrome is?

QUESTION #7: Do you think your friends or schoolmates understand Marfan Syndrome?

QUESTION #8: How does it make you feel?

QUESTION #9: Do you think Marfan Syndrome will get better when you get older?

QUESTION #10: Do you think it's your parents who gave it to you?

QUESTION #11: How many people do you know have a disability? Do you feel closer to them because you both have physical challenges?

QUESTION #12: In the whole world, how many people do you think have some form of Marfan Syndrome?

QUESTION #13: What is the worst thing about having it?

QUESTION #14: How long do people have it?

QUESTION #15: Do you think that it makes you a stronger person inside?

QUESTION #16: Other people recognize a blind person or a wheelchair-bound person, do they also recognize that you are physically limited in certain ways? If not, what does that mean to you?

QUESTION #17: If you could tell everyone in the world what it's like to have it by writing a poem, what would your poem say? Write a poem.

QUESTION #18: If you received Marfan Syndrome through genetics, do you think other people born in your family could possibly receive it too?

QUESTION #19: What is the best thing about having Marfan Syndrome?

QUESTION #20: Why does it cost so much for medical care from doctors and hospitals?

QUESTION #21: If a doctor asked you how you think it could be "cured", what would you say?

QUESTION #22: Do you think pets and animals could be born with it?

QUESTION #24: What do you want to do for your work when you graduate from school?

QUESTION #26: Do you like school?

QUESTION #27: Do you like gym or physical education in school?

QUESTION #28: Do you like your teachers? Explain why?

ADULT WOMEN

QUESTION #111: Does Marfan Syndrome interfere with your intimate life?

QUESTION #112: Do you find that it effects your sense of self-worth as a woman?

QUESTION #113: Are you married?

QUESTION #114: Are you in a serious long-term relationship?

QUESTION #115: Do you have children of your own?

QUESTION #116: If you do have kids, how does Marfan Syndrome effect your relationship with them?

QUESTION #217: Do you drive? Did you have trouble obtaining a driver's license? If so, what was the reason given by the license department?

QUESTION #218: Do you need a driver's license for your job?

QUESTION #219: Do you have a handicap-rating or consideration for your driving ability?

QUESTION #220: Do you cry more often than normal SOLEY because of Marfan Syndrome?

QUESTION #221: What is the worst thing a doctor can say to a person effected by Marfan Syndrome?

QUESTION #222: Either tell of your experience OR write a poem based on personal feelings toward Marfan Syndrome.

ADULT MEN

QUESTION #311: Does Marfan Syndrome interfere with your intimate life?

QUESTION #312: Do you find it effects your sense of self-worth as a man?

QUESTION #313: Are you married?

QUESTION #314: Are you in a serious long-term relationship?

QUESTION #315: Does Marfan Syndrome interfere with your relationship with other men/friends?

QUESTION #316: Does it frustrate you or do you find ways to cope with it?

QUESTION #317: Does it cause you considerable worry? Why?

QUESTION #318: Do you have children of your own?

QUESTION #319: If you have, how does Marfan Syndrome effect your relationship with them?

QUESTION #320: Do you drive? Did you have trouble obtaining a license? If so, what was the reason given by the license department?

QUESTION #321: Do you rely on a driver's license for your job?

QUESTION #322: Do you have handicap-rating or consideration for your driving ability?

QUESTION #323: Do you find yourself overcompensating for Marfan Syndrome-related limitations?

QUESTION #324: Do you cry more often than normal SOLEY because of it?

QUESTION #325: What is the worst thing a doctor can say to a person effected by Marfan Syndrome?

QUESTION #326: Either tell of your experience OR write a poem based on your personal feelings.

Remember to e-mail responses to: booklets2000@hotmail.com