Connective Issues Winter 2018


QUALITY OF LIFE: AGE MATTERS Obstacles Depend on Your Decade

By Todd Richards

In The Marfan Foundation’s recent survey to identify the quality of life issues in the Marfan and related disorders community, more than half of the 1,051 respondents reported that pain (56%) and physical limitations (56%) are the greatest obstacles. The other most common challenges were lack of stamina (43%), vision issues (38%), sleep (36%), feeling “down” (31%), feeling anxious or restless (31%), financial insecurity (28%), gastrointestinal issues (26%), breathing issues (23%), and being underweight (20%). To better understand these findings—and identify ways to help people in the community to overcome their quality of life challenges—it’s important to look at the responses by age. Not surprisingly, there are significant differences. Quality of life obstacles Pain and physical limitations were generally ranked either first or second in all age groups. Stamina, vision issues, and sleep were also generally top five obstacles in all age groups. While being underweight was a top five obstacle in the two youngest age groups, that changed once people hit their thirties. Among those 30-39, being underweight and being overweight received an equal number of responses. For those 40 and over, being overweight became a larger issue. Low self-esteem and poor self-image seem to become a lesser challenge as people age. Taking these two responses together, they are the number one obstacle in the 15-19 age band, third in the 20-29 age band, fourth in the 30-39 age band, and fifth in the 50-59 age band. Improving quality of life Total survey results placed listening to music first, followed by pain medications, mindfulness, physical therapy, and herbal supplements. Individual age bands generally reflected the total survey results. However, a large percentage of respon- dents cited other solutions to improving quality of life, indicating that there is more to learn and share about what the Marfan and related disorders community does to improve its quality of life. We want to know more! Survey participants overwhelmingly indicated that they would like to learn more about nutrition to gain or lose weight and medical/nonmedical solutions to treating foot problems. Nutrition was the first choice from ages 10 to 40. Foot solutions was the first choice from 40 to 70+.


Treating scoliosis was a top five response from age band 0-10 to age band 20-29 and then appeared again in the 70+ age band. Pregnancy/family planning appeared as a signifi- cant response in the 20-29 age band. Social Security Disability was a consistent response from ages 15 to age 59. Pain medications became a significant response from age 40 through age 69. Selected vision issues were top five in the 0-10 age bracket. Physical therapy first appeared in the age 10-14 age group and was a top five choice three more times up to age 69. Learning more about cannabis products was a consistent number four priority from ages 20-40. It did not appear as a significant response before age 20 nor after age 50. More questions The survey findings were very revealing when you look at the priorities of people in different age groups. As expected, it opened the door to a lot of additional questions about various topics—such as pain, weight, and self-image—that the Foundation will explore further in the future. To learn more about how the survey was conducted and read the general findings, please visit

Todd Richards, of Camp Hill, PA, has Marfan syndrome and is a member of the Foundation’s Marfan Writing Group.

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