Turner Syndrome Adult Issues Genetic Discrimination

By the time you ‘re 21 years old, you know all the short jokes and the witty comebacks. You ‘ve learned to live life as a short person, to adapt to your special needs and to move around in an adult world.

Some of the issues that concern adult women with Turner ‘s include their future as a wife and mother. Often, women with Turner ‘s take estrogen to ensure the development of secondary sexual characteristics and to safeguard against the bone loss that leads to osteoporosis.

If you ‘ve undergone fertility testing, you may be disappointed with the results. But modern science increases the odds that you can become pregnant and carry a baby to term. If you ‘re married, ask your doctor about your options. Schedule fertility testing first; you may be among those women with Turner Syndrome for whom hormone replacement therapy will work well.

Once you become a mother, your good health will be an even higher priority. Your child needs you. Make sure you visit your physician regularly for heart, kidney, and thyroid checks.

Support Systems

Taking Charge: Living independently as a Turner adult. Your parents and teachers may have offered a lot of support while you were growing up, but women with Turner Syndrome should develop their own support systems. Recent research has shown that a woman ‘s friends are important to both her mental well-being and her physical health.

Besides your friends, you may find support from other women with Turner Syndrome. Granted, Turner Syndrome is rare enough that chances are no one with your condition lives nearby. But the Internet is a great way to build a network of online pen pals. And your online friends can share knowledge, commiserate, help you grieve or just boost your morale every day.

As helpful as friends may be, remember to leave medical advice up to the experts. One of our friends didn ‘t go for fertility testing because she thought her condition was hereditary. She found out from her support group that her odds of carrying a child with Turner ‘s were about nil.

Genetic Discrimination: An Issue for Women With Turner Syndrome

You might also find a need for support in your employment group. While your employer can ‘t fire you just because you have Turner Syndrome, you may be denied employment, passed over for promotion or be the first to be laid off. This type of subtle action is known as genetic discrimination.

How do you ensure you don ‘t become a victim?

  • Keep abreast of opportunities for promotion and pay raises. If you don ‘t get them, find out why.
  • Compare your experiences to those of co-workers. They can help you understand what you can reasonably expect.
  • Keep evaluations, reports, memos, and copies of e-mail on file. Ask for written feedback on your performance.If you think you ‘re a victim of genetic discrimination, speak with union representatives or a lawyer.
  • Read about genetic discrimination on the Internet. Public awareness and the knowledge base on this topic are growing quickly.

Prevent discrimination by informing your employer and co-workers that you have a normal life expectancy and are taking measures to maintain good health. Good information is the best insurance against jumping to conclusions.