YAP Blog - Youth Advisory Program!

Ovarian Cancer Awareness

Hey, it’s Emily!

As some of you may know, September was Ovarian Cancer Awareness month. Just one month later, a student at my high school lost her yearlong battle to ovarian cancer at the young age of nineteen. She was an avid volleyball player and the captain of her high school team. She is remembered by many for having a sweet personality - the type of girl who could brighten your darkest day. I personally never knew her, but I did know many who had been touched by her. Just hearing her story and watching as thousands of people came to support a volleyball game in her honor showed me how important she was to so many people.

Ovarian cancer is very, very, rare in women under the age of 40, but it's important to know something about it and how to lower your risk. I learned that there are five things you can do to lower your risk of getting most kinds of cancer. They include: 1. Not smoking, 2. Limiting alcohol, 3. Exercising for 30 - 60 minutes 5 or more days a week, 4. Eating a healthy diet, and 5. Seeing your health care provider for regular check-ups.

Facts:

• Ovarian Cancer is NOT prevented by the HPV vaccine. The HPV vaccine helps prevent cancer of the cervix.
• A Pap test is used to detect cervical cancer, not ovarian cancer.
• Ovarian cancer can run in families.
• Early symptoms may include; bloating in the belly area, trouble eating, and/or feeling full quickly, frequent urination, lower back pain, and fatigue.
• Ovarian cancer is diagnosed with blood tests and an ultrasound.
• Birth control pills decrease your risk of developing ovarian cancer; the longer you take them the more protection against ovarian cancer.
• It is important to check in with your health care provider annually and when you are not feeling well.
• Learn about your family history. Just because your aunt had ovarian cancer, doesn’t mean you will get it, it just means that you and your doctor should be aware that this type of cancer runs in your family.
• The #1 way to prevent cancer is never starting to smoke!

-Emily

PCOS Blog: Oligomenorrhea

Oligomenorrhea (pronounced: o-li-go-men-or-rea) is just a fancy name for “few” periods. I don’t think there is any other word in the English language that has more synonyms and slang words to describe a woman’s menstrual cycle, than the word, “period”. Aside from familiar words such as “Aunt Flo”, “Uncle Tom” (time of the month), “my friend” “the red tide”, there are many medical terms, that define variations of it.

Oligomenorrhea is one of these words that may look hard to pronounce, but it simply means “few periods”. Girls with PCOS often have periods only every 3 to 6 months; the periods may last 3-5 days or they may be very heavy or very long. A small number of girls with PCOS have periods too often, even every 2 to 3 weeks (called “Polymenorrhea” or “many periods”).

So why do girls with PCOS have irregular periods?
Having PCOS means that your ovaries are not getting the right hormonal signals from your pituitary gland. Without these signals you will not ovulate (make eggs) regularly and your period will likely be irregular. Irregular periods can be caused by other things including STDs, pregnancy, stress, and weight change, as well so it is important to be evaluated by your health care provider. Typical treatment is healthy nutrition and exercise and oral contraceptive pills (aka birth control pills) taken continuously or in cycles to regulate your hormone levels and your periods. Your health care provider may also suggest anti-diabetes medications if you are overweight. So, how often should Aunt Flo or Uncle Tom visit will depend upon your treatment.

For more PCOS information check out out our guides here.

-Phaedra

2009 MRKH Conference

Hi it’s Emily!

This past weekend Erica, Dennisse, and I helped out at Childrens Hospital’s 4th annual MRKH conference. Many of you may be wondering what these letters stand for. Mayer Rokitansky Kuster Hauser Syndrome (better known as MRKH) is a congenital disorder of the female reproductive tract, named after the doctors who discovered it. Only 1 in about every 5-10,000 females born has this condition, yet it typically isn’t diagnosed until a girl is about 15-17 years old.

Since the number of females who have this condition is relatively small, it is very important that girls with MRKH and their families do not feel isolated. That’s why the Center for Young Women’s Health and the Division of Gynecology at Children’s Hospital Boston offers this conference every fall - to bring teen girls and their families together for education and support. This past Saturday, girls came from all over the country to meet others just like them. There was also a teen and her mom who traveled all the way from Ireland! It was very nice to see all the girls and their families connecting with each other and sharing their experiences.

In the morning, the girls had the opportunity to attend a lecture on MRKH with their parents given by Dr. Marc Laufer, Chief of Gynecology. Following the lecture they attended a support group led by a nurse. Then they got to have lunch together, had time to talk amongst themselves, and got to participate in a workshop. The last session in the afternoon was health care panel where teens and their parents were able to ask questions to the faculty. The girls seemed to really enjoy the chance to meet each other and exchange contact information so that they could keep in touch. They really appreciated finding others who know what it feels like to have MRKH. All and all, the conference went wonderfully and the girls were very excited about the information they learned and the new friendships they had made.

Click here to learn more about MRKH.

-Emily

PCOS Blog: What's up with the dirt on my neck?

It can be very frustrating if you’ve been told that you have a “dirty neck” when in fact you have a very common symptom of Polycystic Ovary Syndrome (PCOS) called acanthosis nigricans (pronounced: a-can-tho-sis ni-gri-cans). It’s not your fault, and all the scrubbing in the world will not make it go away. The darkened area on your neck and perhaps on other areas of your body (such as under your arms and inside your upper thighs) is due to high levels of insulin. You may be tempted to buy topical creams that claim to fade the dark patches but beware, many of these products are expensive and not effective, plus they can cause side effects such as itching. What does work is getting your insulin levels down. The best way to do this is to work towards getting to a healthier weight if overweight. It is also important to follow a low-glycemic diet, exercise and take medication prescribed by your health care provider.

For more info on PCOS, visit our website.

-Phaedra

Honoring National Invisible Chronic Illness Awareness Week

National Invisible Chronic Illness Awareness Week starts today - September 14th, 2009. The purpose is to increase awareness of the fact that about 1 in 2 people have a chronic illness, many of these “invisible”. The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer.

One “invisible” illness that you may not have heard of is Dysautonomia. People with Dysautonomia come from all age groups and walks of life. One form of Dysautonomia, known as postural orthostatic tachycardia syndrome (POTS) is even suspected to affect 1 in 100 adolescents. As a teen, I was diagnosed with Neurally Mediated Hypotension (NMH), another Dysautonomic disorder. Although I didn’t look sick on the outside, my body was sick on the inside, and it was very hard to live a normal teenage life, especially since my friends (and even some doctors) couldn’t see that anything was wrong, and didn’t believe and/or understand it.

Although I’ve grown out of most of the NMH symptoms that affected me as a teen, I still consider myself part of the Dysautonomia family. A great source of inspiration to me is Tyler Gurney, a 19 year old college student with Dysautonomia. Frustrated with the lack of information available, he started a non-profit organization dedicated to raising awareness about this syndrome. His incredible website includes info about learning to live and cope with Dysautonomia, a blog/vlog chronicling his challenges with the disorder, and more.

For more information on National Invisible Chronic Illness Awareness Week, check out: Invisible Illness Week

See Tyler's site here: 12 More Pages

For more information on Dysautonomia, visit: DYNA Kids

-Amanda

Shannon's Blog

Hey readers! We know of an awesome, soon-to-be 9th-grader, Shannon, who has her own blog about living life as a teen with a serious health condition called pulmonary hypertension, and also just living life as a teen in general. She has a great attitude about her illness, her friends, sports, and dealing with all the many things that come up in her life.

Check out Shannon's blog here!  And if you are a college-bound teen with a chronic illness, we have resources for you here on youngwomenshealth.org, about how to structure your life to take good care of your health while you're at school.

 - Freedom