Category Archives: Health

New Cancer Screening Suggestions for People With Down Syndrome

A group of scientists headed by Dr. Marie-OdileRethoré from the Institut Jérôme Lejeune, recently published a new proposal for cancer screening guidelines for the Ds community.

Based on the fact that people with Ds are affected by cancer differently than those without – for example they get solid tumors half as much – these doctors suggest changing the way doctors perform cancer screening tests.

The specific tumor profile in DS warrants an adapted screening program for breast, colon, cervical and testicular neoplasia.

  • “We propose that adults with DS should participate in colon cancer screening.
  • For women with DS, breast cancer screening is not recommended, but annual clinical monitoring should be conducted, with the option to perform ultrasound or MRI examination in suspect cases.
  • For cervical cancer, screening could be proposed to women who are sexually active beginning at age 25 years.
  • Annual surveillance for testicular cancer via palpation by a health professional is preferable from ages 15 to 45.
  • In case of additional genetic predisposition in a person with DS, a surveillance similar to other family members is recommended.”



Originally posted 10/25/15
The fight continues. We can only hope that researchers will find this question worthy of study.

National Down Syndrome Awareness MonthOctober is National Down Syndrome Awareness Month and most parents in the community are contributing in their own way. Some share photos on Facebook and other social media. Some tell stories of their child’s accomplishments or point out those of others. A recent article in the San Diego Union Tribune provided many facts about Down syndrome and introduced readers to some individuals who have surpassed society’s expectations regarding the success that people with the condition are believed to be capable of.

The headline reads “Those with Down syndrome living longer, defying limits” with a subtitle of “Better preventive care adds to quality of life.” To attract those outside of the Down syndrome community, the choice in headlines was obvious: a short synopsis of what has changed. The focus on life expectancy however is misleading.

“Debra Emerson, CEO of El Cajon-based St. Madeleine Sophie’s Center, which educates and empowers people with developmental disabilities, said the life expectancy for those with Down syndrome has risen dramatically in recent decades from age 25 in 1983 to 60 today.”

What the article doesn’t tell readers, and most people don’t know (including those most closely affected) is that those numbers only apply to Caucasians. According to a report published by the Center for Disease Control, the numbers for non-whites are still quite dismal.

Racial disparities in Down syndrome

According to the findings, the median age at death for people with Down syndrome during the years 1968—1997 varied by racial group. For whites it increased from 2 years in 1968 to 50 years in 1997. For blacks during the same period, the median age at death increased from 0 to 25 and for other racial groups it only rose to 11.

The study is quite old, as research goes, but those involved at the time warned that it should be investigated further.

“However, racial disparity still exists in DS survival, and further study is needed to determine the causes of this disparity…

Additional study is needed to determine why persons with DS die much younger if they are black or of other races than if they are white. Identification of these factors may permit development of interventions to eliminate this racial disparity and further improve the survival of all persons with DS.”

When the study was first published, ABC News looked for a reaction from one of our national organizations.

“The National Down Syndrome Society said the study indicates a “serious disparity that really needs to be addressed.””

“”We always acted on the assumption that there was some kind of socio-economic kind of disparity,” said Jennifer Schell Podoll, a spokeswoman. “But we’re very surprised reading that survey to find out the racial disparity was so stark.””

Researchers involved in a more recent study (2012) had similarly surprising findings when they looked at childhood survival rates rather than overall life expectancy.  Non-Hispanic black children with Down syndrome were twice as likely to die during childhood and adolescence compared to Non-Hispanic white children with Down syndrome.

So while the overall outlook for people with Down syndrome is much improved, a large segment of our population is still dying prematurely. Our national organizations have vowed to make this a priority, but the public has not seen any specific details of how that will be done.

Beverly Johnson
Photo Credit: Down Syndrome World

Only one voice has risen above the crowd, telling the truth to a national audience. Supermodel Beverly Johnson, first woman of color to be seen on the cover of Vogue magazine in 1974, recently in the media for her involvement in the Bill Cosby scandal, has a cousin who has Down syndrome.  When interviewed for last year’s Down syndrome Awareness Month about her position as national spokesperson for Global Down Syndrome Foundation, Ms. Johnson referenced the health disparities that exist.

“”There’s a remarkable disparity between children of color who get Down syndrome — life expectancy is age 23 — and non-black children with Down syndrome — life expectancy is 63 years old,” she said.”

Meanwhile, another awareness campaign is taking place and people are spreading inaccurate information and half-truths in a well-meaning effort to educate the public.

As the founder of an online organization for parents and caregivers of adults who have Down syndrome, and the mother of a bi-racial 28-year-old man who has Down syndrome, this misinformation is maddening and quite frightening.  As long as we continue to tout the Caucasian numbers as the whole story we allow the status quo to continue.  We cannot be satisfied with this outcome. We cannot present ourselves as advocates for equality and inclusion for people with Down syndrome and other intellectual disabilities and completely ignore the fact that half our population is still dying young!

We need to make ourselves aware of the truth!

It’s a matter of life and death.

Down syndrome and Racial disparities


I Can Be a Father (With Down Syndrome)

Has your son who’s 5’ 4” (or shorter) told you that he’s going to be an NBA player? Has your beautiful daughter who has weak ankles and knees spoken to you about her dream of becoming a prima ballerina? Does your son who has absolutely NO rhythm and can’t carry a tune in a bucket proclaimed himself to be a bona fide rock star?

That last one is mine. My son has identified himself as a rock star since he was a toddler. I’ve decided to go along with the dream even though I cringe a little every time he sings. That’s what moms are for – to help their children do whatever it takes, within reason, to achieve their goals. He’s also demanded at different times that he’s going to be president, the King of bowling, and a WWE superstar. I agree enough to give him self-confidence but we both know none of those things are likely to happen.

It’s one thing when the dreams children dream aren’t feasible because their bodies just aren’t built that way. Not everyone can be a professional athlete or leader of the free world. [Not going there but wouldn’t it be nice if someone with Down syndrome ruled the world.]

But what about when the dream is physically possible, but not “socially acceptable?” Continue reading I Can Be a Father (With Down Syndrome)

All About Dental Care: Death, Research and Advocacy

The news story

A terrible story hit the news recently. It involved a young man who had Down syndrome who died after receiving dental care. The family of the man has been waiting for justice for four years.

We see too many stories like these: ones involving innocents who die at the hands of people in power who we trust with our loved ones. These stories make us wonder if we are doing all we can to protect our loved ones and the rest of our community. Continue reading All About Dental Care: Death, Research and Advocacy

Why we need more research! #RaceAndDownsyndrome

The following is a list of excerpts from

Health and Health Care Disparities Among People with Disabilities

Disability Rights Education & Defense Fund 

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  • “While disability affects people of all races, ethnicities, genders, languages, sexual orientations, and gender identities, this does not mean that impairment occurs uniformly among racial and ethnic groups.”
  • “It is vitally important to distinguish between disability as a natural part of the human condition, and disability-related health disparities that can lead to compromised care, ill health, institutionalization, and premature death. These are not consequences that inevitably follow the simple fact of impairment.”
  • “In short, the relationship between race and disability is a complex one that needs to be freshly viewed as race and disability together may have a previously unaccounted cumulative impact on creating health disparities.”
  • “PWD and members of racial minorities often share socio-economic characteristics and related health access barriers due to the expense of maintaining health with a disability. PWD are much more likely to experience various forms of material hardship— including food insecurity, not getting needed medical or dental care, and not being able to pay rent, mortgage, and utility bills—than people without disabilities, even after controlling for income and other characteristics.”
  • “The importance of appropriately disaggregated data is also raised because the nonhomogenous categories “people with disabilities” and “racial and ethnic minorities” experience different, and often surprising, specific health disparities.”
  • “People with developmental disabilities are often assumed to have greater access to care as a population that presumably visits care providers all the time, and yet this population experiences high rates of preventable health conditions such as fractures, skin conditions, obesity, poor oral health, and vision, hearing, and mental health problems. A multinational study of 16,000 adults in 12 countries, found that 68 percent falsely believe that people with intellectual disabilities had the same or better health care as the general population.”
  • “It cannot be assumed that because PWD of color may need more health care services, they actually get that health care easily, or that they receive appropriate health care, especially when additional factors such as coverage limitations, physical inaccessibility and lack of policy modification, and stereotypes are at play. PWD of color or who are members of other minority groups are very likely to be encountering instances and forms of “double discrimination” that no single movement is effectively identifying or actively working to address.”
  • “While the correlations above are clear, the extent of the connections, the direction of any causative links, and the impact of multiple systemic health barriers in the lives of PWD of color are unknown because little data respecting the interaction of race and disability has been collected and/or analyzed with those connections in mind.”
  • The disability and racial minority communities cannot accurately understand how to tackle these myriad barriers and disparities without much more information on how disability and minority cultures and stereotypes, as well as additional variables such as socio-economic status, sexual orientation, and gender coalesce around health and illness.”

Health in Adults who have Down syndrome – 5 Areas of Concern

Research summary by Stephanie Holland

Lack of yearly physical exams / limited access to care:

Research suggests (1) that primary care physicians may be able to respond to complaints, but may not be completing much needed preventative medicine options.  Some doctors are unwilling to accept Medicaid patients, or patients they perceive as complicated (requiring more time / resources). They may feel inadequately trained to accept patients with intellectual and developmental disabilities.

Lack of emotional support:

Often people with developmental disabilities are surrounded by paid caregivers.  One study found “A full 24.0% of these adults reportedly had no one to talk to about personal things or often felt lonely, a significantly higher rate than in the No Disability group.” (2)  “The most common forms of stress reported in these studies include: hearing people argue, death or serious illness of someone close, constantly being interrupted, and not being quick enough. Interestingly, interpersonal stress seems to be most common. This may be because people with ID typically have limited control over who they are with and have limited ability to escape or end negative social interactions.” (3) Depression and behavior changes can result and impact overall health.

Dental disease:

“People with ID have poorer oral hygiene and higher prevalence and greater severity of periodontal disease. Caries rates in people with ID are the same as or lower than the general population. However, the rates of untreated caries are consistently higher in people with ID. Two subgroups at especially high risk for oral health problems are people with Down syndrome and people unable to cooperate for routine dental care.” (4) Many patients with intellectual disabilities rely on Medicaid, which does not offer adult dental coverage. Dental disease can contribute to a variety of other health issues.

Early onset Alzheimer’s disease and dementia:

People with Down syndrome are prone to early ageing and Alzheimer’s disease. Personality and behavioral changes, and a decrease in cognitive and language ability are indicators of the disease. (5)  There is a tendency for providers and caregivers to overlook other issues that may present as a decline in functioning. (6)  Other factors, including sleep issues, sensory and musculoskeletal impairments, and depression (7) need to be ruled out.

Age Related Comorbidity:

There is a higher probability that adults with Down syndrome will develop visual and hearing impairments, epilepsy, thyroid disorders, and dementia.  Osteoporosis, obesity, diabetes, poor dental health, and the effects of taking several medications for a long period of time also diminish overall health. (8)


(1) Lunsky, Yona, et al. “Periodic health examinations for adults with developmental disabilities Are we doing enough?.” Canadian Family Physician 60.2 (2014): 109-110.

(2) Havercamp, Susan M., Donna Scandlin, and Marcia Roth. “Health disparities among adults with developmental disabilities, adults with other disabilities, and adults not reporting disability in North Carolina.” Public Health Reports 119.4 (2004): 418.

(3) Lunsky, Yona. “The impact of stress and social support on the mental health of individuals with intellectual disabilities.” salud pública de méxico 50 (2008): s151-s153.

(4) Anders, Patrick L., and Elaine L. Davis. “Oral health of patients with intellectual disabilities: a systematic review.” Special Care in Dentistry 30.3 (2010): 110-117.

(5) Määttä, T., et al. “Adaptive Behaviour Change and Health in Adults with Down Syndrome: A Prospective Clinical Follow-Up Study.” (2014).

(6) Torr, Jennifer, et al. “Aging in Down syndrome: Morbidity and mortality.” Journal of Policy and Practice in Intellectual Disabilities 7.1 (2010): 70-81.

(7). Wark, Stuart, Rafat Hussain, and Trevor Parmenter. “Down syndrome and dementia Is depression a confounder for accurate diagnosis and treatment?.” Journal of Intellectual Disabilities (2014): 1744629514552152.

(8) Glasson, E. J., D. E. Dye, and A. H. Bittles. “The triple challenges associated with age‐related comorbidities in Down syndrome.” Journal of Intellectual Disability Research 58.4 (2014): 393-398.