Are you 18 years or older?
Yes
No
Do you live in the United States?
Yes
No
Are you a person with EDS or a family member of someone with EDS?
Yes
No
Did you already complete this survey for yourself or a family member?
Yes
No
Please create a 4-digit identifier that should be used for ALL members of your family who complete the survey. Use 2 letters and 2 numbers: __ __ __ __
If you have completed this survey already for yourself or a family member, please insert the 4-digit identifier from the prior survey: __ __ __ __
1 . Which best describes you (the person who is responding to this survey)?
A person with Ehlers-Danlos syndromes (EDS)
Parent/guardian of a child with EDS (26 and younger)
Parent/guardian of a child with EDS (27 and older)
An individual with close family member(s) who have EDS
Does this person live in the same household?
Yes
No
Is this person financially independent?
Yes
No
2 . How many family members are living with EDS?
One Two Three Four or more
3 . What type of EDS does the Affected Person have?
Hypermobile EDS (hEDS) Vascular EDS (vEDS) Classical EDS (cEDS) Classical-like EDS (clEDS) Cardiac-valvular EDS (cvEDS) Arthrochalasia EDS (aEDS) Dermatosparaxis EDS (dEDS) Kyphoscoliotic EDS (kEDS) Brittle Cornea Syndrome (BCS) Spondylodysplastic EDS (spEDS) Musculocontractural EDS (mcEDS) Myopathic EDS (mEDS) Periodontal EDS (pEDS) Combination, mixed types EDS Hypermobility Spectrum Disorder (HSD) Unknown or Not Sure
4 . In which year was EDS identified?
Enter the Year Unknown Don't remember
Please enter the year in YYYY format within the range of 1920 to 2023.
5 . Please provide your best estimate of the number of EDS-related healthcare events the Affected Person had in 2022. Please enter a whole number, and enter 0 if any do not apply.
Number of visits to primary care physicians (e.g., family doctors, internists, pediatricians)
Number of visits to specialty physicians (e.g., orthopedics, neurology, cardiology, gastroenterology, pain management, genetics, psychiatry)
Number of physical therapy and occupational therapy visits
Number of visits to other therapy providers (e.g., massage, acupuncture, chiropractor, manual therapy)
Number of emergency room visits
Number of hospital admissions
Number of out-of-state trips for medical care
6 . What is the estimated average monthly amount of time (hours) that the Affected Person spent in healthcare encounters in 2022? Please include travel time.
7 . Does EDS currently limit the ability of the Affected Person to complete any of the following activities? Please check ONLY ONE answer for each activity.
8 . Where does the Affected Person currently live?
AL : Alabama AK : Alaska AZ : Arizona AR : Arkansas CA : California CO : Colorado CT : Connecticut DE : Delaware DC : District of Columbia FL : Florida GA : Georgia HI : Hawaii ID : Idaho IL : Illinois IN : Indiana IA : Iowa KS : Kansas KY : Kentucky LA : Louisiana ME : Maine MD : Maryland MA : Massachusetts MI : Michigan MN : Minnesota MS : Mississippi MO : Missouri MT : Montana NE : Nebraska NV : Nevada NH : New Hampshire NJ : New Jersey NM : New Mexico NY : New York NC : North Carolina ND : North Dakota OH : Ohio OK : Oklahoma OR : Oregon PA : Pennsylvania RI : Rhode Island SC : South Carolina SD : South Dakota TN : Tennessee TX : Texas UT : Utah VT : Vermont VA : Virginia WA : Washington WV : West Virginia WI : Wisconsin WY : Wyoming
9 . including the Affected Person, how many people lived in the same household as the Affected Person in December of 2022? (Include people who spent at least half of their time living in the household?
10 . What is the sex of the Affected Person? (assigned at birth)
Male Female Prefer not to answer
11 . What is the race of the Affected Person?
American Indian or Alaska Native Asian Black or African American Multi-racial Native Hawaiian or Other Pacific Islander White or Caucasian Other Prefer not to answer
12 . What is your ethnicity the Affected Person?
Hispanic Non-Hispanic Prefer not to answer
13 . What is the highest level of education attained by the Affected Person? If completing for a person who is under age 18, please choose "Not applicable".
Less than a high school diploma High school diploma (General Education Diploma or equivalent) Some College (1-4 years, no degree) Associate's Degree (AS, AAS, etc.) Bachelor's Degree (BA, BS, etc.) Master's Degree (MA, MS, etc.) PhD or Professional School Degree (MD, JD, etc.) Prefer not to answer Not applicable Do not know
14 . What is the marital status of the Affected Person? If completing for a person who is under age 18, please choose "Not applicable".
Married Unmarried but living with partner Widowed Divorced/ Separated never married Prefer not to answer Not applicable
15 . What were the Total Earnings of the Affected Person and the Affected Person's household in 2022?
Note: This includes the amount received through wages, salary, commissions, overtime pay, or tips from all jobs before taxes or other deductions, and excludes any social security income, supplemental security income (SSI), social security disability insurance (SSDI), or income from savings accounts or other investments. We recommend that you refer to your 2022 tax return.
If completing for a person who is under age 18, please choose "Not applicable".
a. What were the total earnings of the Affected Person in 2022?
None or insignificant $1,000 to less than $25,000 $25,000 to less than $50,000 $50,000 to less than $75,000 $75,000 to less than $100,000 $100,000 to less than $150,000 $150,000 to less than $200,000 $200,000 to less than $300,000 $300,000 to less than $400,000 $400,000 to less than $500,000 More than $500,000 Prefer not to answer Don't know or not applicable
b. What were the total earnings the Affected Person's entire household in 2022?
None or insignificant $1,000 to less than $25,000 $25,000 to less than $50,000 $50,000 to less than $75,000 $75,000 to less than $100,000 $100,000 to less than $150,000 $150,000 to less than $200,000 $200,000 to less than $300,000 $300,000 to less than $400,000 $400,000 to less than $500,000 More than $500,000 Prefer not to answer Don't know or not applicable
Affected Person's Income Affected Person's Household Income
16 . In 2022, how much financial assistance or disability income did the Affected Person receive? If the Affected Person was not eligible or did not receive any of the following, please enter 0.
Please enter whole numbers only, no commas.
Monetary subsidies received from charitable organizations or other assistance programs (does not includes goods or services, monetary contributions only)
Supplemental Security Income (SSI) Disability Benefits
Social Security Disability Insurance (SSDI)
Commercial disability insurance
VA benefits, VA disability compensation
State or federal government employee benefits
State disability insurance
Monetary assistance from family and friends
Monetary subsidies received from charitable organizations or other assistance programs (does not includes goods or services, monetary contributions only Supplemental Security Income (SSI) Disability Benefits
Social Security Disability Insurance (SSDI)
Commercial disability insurance
Worker's Compensation
VA benefits, VA disability compensation
State or federal government employee benefits
State disability insurance
Monetary assistance from family and friends
Other
17a. In 2022, what type of insurance did the Affected Person use to pay for the majority of medical expenses? Please check the appropriate box for each type of health insurance. Radio button
17b. If no coverage in 2022, please provide reason:
Could not afford Lost employment Other reason
18 . Does the Affected Person have insurance coverage for the below?
OUT-OF-POCKET HEALTH CARE SPENDING Health insurance premiums
Health insurance deductibles
Copayments or coinsurance for physician office visits, emergency room visits, or hospital admissions
Diagnostic tests (such as blood tests, x-rays and other scans)
Genetic counseling or genetic tests
Alternative or non-traditional treatments (such as alternative therapies, massage therapy, dry-needling, cupping, acupuncture)
Mental health treatments, including counseling
Physical/occupational/speech therapy
Oral surgery and related services
Over the counter drugs (such as ibuprofen from drugstore)
Vitamins, calorie concentrates, and other supplements
Specialty clothing, such as compression stockings or garments
Equipment, such as braces, collars, splints, night guards
19a. In 2022, approximately how much did the Affected Person spend on the following healthcare-related items? Please provide your best estimate in the table below. Please enter 0 in the text box if no money was spent. Please include all out-of-pocket expenses (EDS and non-EDS).
Health insurance premiums
Health insurance deductibles
Copayments or coinsurance for physician office visits, emergency room visits, or hospital admissions
Prescription medications
Diagnostic tests (e.g., blood tests, x-rays and other scans)
Genetic counseling or genetic tests
Alternative or non-traditional treatments (alternative therapies, massage therapy, dry-needling, cupping, acupuncture)
Mental health treatments, including counseling
Physical/occupational/speech therapy
Routine dental care
Routine eye care
Oral surgery, care, and services
Over the counter drugs (e.g., ibuprofen from drugstore)
Medical foods
Vitamins, calorie concentrates, and other supplements
Specialty clothing, such as compression stockings or garments
Equipment such as braces, collars, splints, night guards
Expenses related to purchasing equipment (such as pulse oximeter, walker, hospital bed, weighted blanket).
Expenses related to purchasing/installing/modifying special equipment at home (such as a shower chair).
Expenses on home modifications (such as stair lifts, ramps).
Expenses related to purchasing/installing/modifying a personal family vehicle to accommodate a driver or passenger with disability.
Expenses related to hiring someone, including the costs of the hiring process and payments made to professionals, relatives, or friends for providing EDS-related daily care.
Expenses related to hiring someone (such as a professional, relative, or friend) to provide daily care to other household members due to the Affected Person's reduced functional ability.
Increased transportation costs related to medical care for EDS (such as driving to and from clinics or specialized facilities, hotel costs, meals).
Other travel-related expenses incurred because of EDS.
19b. OTHER EQUIPMENT AND EXPENSES
Expenses related to purchasing equipment (such as pulse oximeter, walker, hospital bed, weighted blanket). Expenses related to purchasing/installing/modifying special equipment at home (such as bathroom equipment).
Expenses on home modifications (such as stair lifts, ramps).
Expenses related to purchasing/installing/modifying a personal family vehicle to accommodate a driver or passenger with disability.
Expenses related to hiring someone, including the costs of the hiring process and payments made to professionals, relatives, or friends for providing EDS-related daily care.
Expenses related to hiring someone (such as a professional, relative, or friend) to provide daily care to other household members due to the Affected Person's reduced functional ability.
Increased transportation costs related to medical care for EDS (such as driving to and from clinics or specialized facilities, hotel costs, meals).
Other travel-related expenses incurred because of EDS.
20 . In a typical month in 2022, on average, about how many hours of daily help (paid or unpaid) did the Affected Person require on a typical day while at home? Include meal preparation, housekeeping, and personal care.
Between 0-4 hours Between 4-8 hours Between 8-12 hours Between 12-16 hours Requires round-the-clock supervision
21 . What was the Affected Person's job status in December 2022?
Employed full-time Employed part-time Not employed, but seeking work Not employed, but in school Not employed, not seeking work and not in school Retired Not applicable
22 . In December 2022, if the Affected Person was working part-time, no longer working or retired, did EDS play a major role in the Affected Person's decision to move to part-time work or stop working?
Yes No Not sure
23a. In 2022, did the Affected Person receive the health care needed?
No Yes, sometimes Yes, most of the time
23b. Did financial reasons prevent the Affected Person from getting the health care needed?
No Yes, sometimes Yes, most of the time
May we contact you for additional information or to be a case study?
No Yes
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