Table 2.
Participant demographics for ALD cross-sectional study
| Cross-sectional study participants, n | 109 |
| Sex, n (%) | |
| Male | 47 (43.1) |
| Female | 62 (56.9) |
| Age in years | |
| Mean ± 1 SD | 51 ± 17 |
| Range | 18–83 |
| Race, n (%) | |
| Asian | 3 (2.8) |
| Black/African American | 1 (0.9) |
| White | 98 (89.9) |
| Other | 7 (6.4) |
| Hispanic or Latino, n (%) | |
| Yes | 15 (13.8) |
| No | 94 (86.2) |
| Country, n (%) (16 total countries represented) | |
| United States | 54 (49.5) |
| Canada | 5 (4.6) |
| Australia | 10 (9.7) |
| United Kingdom | 16 (14.7) |
| France | 2 (1.8) |
| Argentina | 7 (6.4) |
| Bolivia | 2 (1.8) |
| Chile | 1 (0.9) |
| India | 1 (0.9) |
| Iran | 1 (0.9) |
| Ireland | 3 (2.8) |
| Mexico | 1 (0.9) |
| New Zealand | 3 (2.8) |
| Poland | 1 (0.9) |
| South Korea | 1 (0.9) |
| Sweden | 1 (0.9) |
| U.S. states represented, n | 21 |
| Canadian provinces represented (Ontario), n | 1 |
| Employment status, n (%) | |
| Employed full-time | 29 (26.6) |
| Employed part-time | 9 (8.3) |
| On disability | 16 (14.7) |
| Not working/not on disability | 8 (7.3) |
| Retired | 30 (27.5) |
| Student | 6 (5.5) |
| Stay-at-home parent | 1 (0.9) |
| Self-employed | 7 (6.4) |
| Other | 3 (2.8) |
| Has ALD impacted your employment status or choice?, n (%) | |
| Yes | 60 (55.1) |
| No | 40 (36.7) |
| I don't know | 8 (7.3) |
| Prefer not to answer | 1 (0.9) |
| Highest level of education, n (%) | |
| Grade school | 2 (1.8) |
| High school | 29 (26.6) |
| Technical degree | 19 (17.5) |
| College | 33 (30.3) |
| Master's or Doctorate | 24 (22.0) |
| None | 2 (1.8) |
| Has ALD prevented you from pursuing additional education?, n (%) | |
| Yes | 18 (16.5) |
| No | 87 (79.8) |
| I don't know | 4 (3.7) |
| Marital status, n (%) | |
| Married | 61 (56.0) |
| Single | 26 (23.9) |
| Widowed | 3 (2.7) |
| Divorced | 13 (12.0) |
| Separated | 3 (2.7) |
| Registered partnership | 3 (2.7) |
| Has ALD impacted your marital status or decision to pursue relationships?, n (%) | |
| Yes | 35 (32.1) |
| No | 70 (64.2) |
| I don't know | 4 (3.7) |
| Diagnosed with ALD?, n (%) | |
| Yes | 59 (54.1) |
| No | 43 (39.5) |
| I don't know | 7 (6.4) |
| Diagnosed with AMN?, n (%) | |
| Yes | 71 (65.1) |
| No | 27 (24.8) |
| I don't know | 11 (10.1) |
| Diagnosed with cerebral form of ALD?, n (%) | |
| Yes | 18 (16.5) |
| No | 81 (74.3) |
| I don't know | 10 (9.2) |
| Diagnosed with Addison's disease?, n (%) | |
| Yes | 35 (32.1) |
| No | 71 (65.1) |
| I don't know | 3 (2.8) |
| Ever been in adrenal crisis?, n (%) | |
| Yes | 22 (20.2) |
| No | 82 (75.2) |
| I don't know | 5 (4.6) |
| Years since diagnosis | |
| Mean ± 1 SD | 16 ± 11 |
| Range | 1–40 |
| Years since first noticed symptoms | |
| Mean ± 1 SD | 15 ± 11 |
| Range | 0–50 |
| Ever misdiagnosed?, n (%) | |
| Yes | 38 (34.9) |
| No | 68 (62.4) |
| I don't know | 3 (2.7) |
| Ambulation, n (%) | |
| Walk independently without assistance | 50 (45.9) |
| Primarily use a cane or crutches | 34 (31.2) |
| Primarily use a walker | 10 (9.2) |
| Use a wheelchair or motorized scooter sometimes and walk sometimes | 7 (6.4) |
| Primarily use a wheelchair or motorized scooter | 8 (7.3) |
| Hours of home health aide per week, n (%) | |
| None | 75 (68.8) |
| 1–5 h | 15 (13.8) |
| 6–10 h | 6 (5.5) |
| 16–20 h | 3 (2.7) |
| Greater than 20 h | 10 (9.2) |
| Speech, n (%) | |
| Talk clearly and have no changes in speech | 89 (81.7) |
| Some speech changes | 17 (15.6) |
| Impaired speech, and people occasionally ask to repeat words or phrases | 2 (1.8) |
| Impaired speech that is often not understood by others | 1 (0.9) |
| Positive genetic test for ABCD1 gene mutation?, n (%) | |
| Yes | 89 (81.6) |
| No | 5 (4.6) |
| No genetic testing | 11 (10.1) |
| I don't know | 4 (3.7) |
| Functional ability, n (%) | |
| No symptoms | 4 (3.7) |
| No significant disability | 26 (23.8) |
| Slight disability | 32 (29.4) |
| Moderate disability | 29 (26.6) |
| Moderately severe disability | 18 (16.5) |
| Ever received bone marrow or stem cell transplant?, n (%) | |
| Yes | 5 (4.6) |
| No | 104 (95.4) |
| Current treatments, n (%)a | |
| Hormone replacement, steroid medications, or corticosteroids | 34 (31.2) |
| High dose antioxidants (OTC) | 4 (3.7) |
| Lorenzo's oil | 2 (1.8) |
| Spasticity-reducing medications (Baclofen, Tazanidine, Botox, etc.) | 33 (30.3) |
| Neuropathic pain medications or anti-epileptic medications (Neurontin e.g. Gabapentin) | 32 (29.4) |
| Medications for overactive bladder or bowel | 21 (19.3) |
| Cannabidiol (CBD) | 15 (13.8) |
| Anti-depressants or anti-anxiety medications | 24 (22.0) |
| Physical therapy | 32 (29.4) |
| None | 20 (18.4) |
Multiple-choice options that were not selected by any participant have been omitted for conciseness
Percents have been normalized for missing responses
aPercents may not add up to 100% because some individuals receive multiple treatments