Make Your Voice Heard! - Turner Syndrome Foundation //

Make Your Voice Heard!

“I have Turner Syndrome and it took a very long time to diagnose my condition. I would greatly appreciate any representation this community is given.”

Shaylie, Oregon

For February Awareness Month, Turner Syndrome Foundation launched a petition to advocate for patient care. The aim of this petition is that policymakers at every level of government will become aware of Turner Syndrome and the urgent need for support. We need your support to make this petition successful. Please sign the petition and share it with others to help us reach our goal of having 1,000 signatures from all 50 U.S. states by the end of February!

Access to care for patients with Turner Syndrome is lacking and we need to prioritize supporting this community. But, don’t just take it from us. Read below to see what some people are saying in response to the petition.

First, here are some stats on the petition since it was launched on February 1st, 2021:

  • 244 signatures
  • 36 states represented
  • 68 patients, 49 parents, 47 other family members, 57 friends, 13 general supporters
  • *Data as of February 5, 2021*

Community Stories

By reading through the stories shared in response to the petition, it becomes clear that there are many different areas of need for support of this community. Some of the common challenges include:

  • Delayed diagnosis
  • Lack of knowledgeable health care providers
  • Financial barriers for essential treatments
  • Lack of public awareness and acceptance

Below, you can read just some of the responses. Visit the petition to read more.

Delayed Diagnosis

“My youngest daughter was recently diagnosed with Turner Syndrome at 12, despite showing signs of having this since birth. I wish our pediatrician or cardiologist would have diagnosed her sooner.” -Lynsay, Texas

“I am a patient with Turner Syndrome and went my entire childhood intuitively knowing that I was different but without any answers from medical professionals. Women and girls with Turner Syndrome deserve better than that. With greater education and support in the healthcare system, invaluable interventions and treatments will be made more accessible for people like me.” -Maryann, California

“As someone who was just recently diagnosed at age 29 years old, I was shocked at the lack of knowledge regarding TS from numerous providers and the lack of resources available. We should not be forced into making major medical decisions based off of what our health insurance does/does not cover. It is critical that we receive funding in order to expand our knowledge base and provide all encompassing medical treatment.” -Sara, New Jersey

“My daughter was diagnosed late at 15, because she does not have many of the outwardly symptoms of TS. She is 5 feet 8 inches tall. Since 12 years old we kept asking for them to look into why she wasn’t getting her period and they kept saying wait till she turns 15. I should have pushed harder. I knew something wasn’t right. If any of her doctors would have done more testingwe could have found this out sooner. She is so upset because her body is not changing outwardly like her peers. If she would have been diagnosed sooner we could have started treatment sooner. She has only been on the hormones for 6 months but there is no change. I’m frustrated with how little people know about Mosaic TS“. -Patti, Wisconsin

Lack of Knowledgeable Health Care Providers

“My daughter Abby was diagnosed with Turner Syndrome in Utero. We were urged to abort, told she would never make it to birth and if she did she would lead a miserable life full of complications. I didn’t listen and now have a thriving 6 year old. We have been fortunate to have an endocrinologist with much knowledge of TS however no other medical professional we have seen has ever heard of Turner Syndrome.” -Misty, Ohio

“I am a TS patient and now work in health care as a Physician Assistant. I support this petition because of my experiences as both a patient and a health care provider. I’m 26 years old, and it’s taken a lot of research and many years to get the care that I need. My hope is to make it easier for girls with TS to get the high quality care they need and deserve.” -Kayla, Pennsylvania

“My daughter has TS and has benefitted so much from the care and assistance she has received & this should be expanded & provided to all girls with TS.” -Deborah, Minnesota

“My 9 year old daughter had a confirmed diagnosis at birth after a challenging fraternal twin pregnancy (fetal hydrops/cystic hygroma). I’m fortunate to have a healthcare background but navigating the system advocating for my daughter has still been a challenge. Educating primary care doctors and health insurers, as well as regulating prescription medication costs are important first steps to improve access for our girls”. -Christina, Maryland

Financial Barriers for Essential Treatments

“I have struggled for a year to get my daughter finally approved for affordable access to growth hormone so she can grow to be on the growth chart. I have been surprised by medical professionals who don’t know what Turner Syndrome is!” -Christa, North Carolina

“As a woman with Turner Syndrome, I have felt isolated. I have experienced the infancy of knowledge of my condition- both the emotional as well as the physical. Insurance companies need to be made aware of this. I just had to pay for a bone scan that should have been covered. This is only one example. Many women have emotional needs that insurance will not cover. We need this help. Thank you.” -Wendy, Pennsylvania

“I was not diagnosed until age 26. I have diabetes and my hearing loss is in the profound category. Hearing aides are expensive and we need help with other medical problems. Even if we have good insurance, deductibles are still very high and does not cover hearing aides”. -Michelle, California

“I was diagnosed when I was 11 and am living a beautiful life as a butterfly! I’m now 35 and have a loving husband and successful career. Dreams do come true and you’re stronger than you think. I wouldn’t be where I am now without the insurance coverage and medical care I received and continue to receive. We need to all we can to help other understand and provide care for women and girls with TS.” -Lauren, California

Lack of Public Awareness and Acceptance

“I am a pediatric neurologist and this cause is extremely important to me. In addition, a close friend’s daughter has this condition and I want her to be able to achieve her potential and have every opportunity.” -Jessica, Colorado.

“Both of my twin nieces have Turner Syndrome and I feel like there should be more information and more awareness to this disease. We just have to take it day by day on what this disease can affect in their body with no answers in sight. I would love to see more research on this disease so we can learn more about it and expect more of what’s to come.” -Stephanie, Tennessee

“I am a mom to 13 yr old butterfly, diagnosed with TS since birth. My daughter unfortunately has multiple health complications to TS. I have been a proud advocate, for Turner Syndrome in the state of Pennsylvania for the past 9 years working with state & local legislatures proclaiming February as TS awareness month. During the month, information is shared on the senate floor at the State Capitol expressing more funding and awareness is needed for Turner Syndrome.” -Dana, Pennsylvania

“My daughter has Turner Syndrome and we have found that there is almost no awareness to the general public, we would like this to be more widely known and recognized!” -Kristen, Missouri

Make your voice heard! In order for policymakers to become aware of Turner Syndrome and take action, we must demonstrate the need that exists within this community. Every signature on our petition and story shared will take us one step closer to our goal!

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