Category: awareness

NIAW Roundup

Posted on by Grayson Schultz

We’re rounding out NIAW. I was hoping to bring some personal stories about infertility up this week. Between traveling, my master’s capstone, and other people living their lives and dealing with their illnesses, that didn’t happen.

In lieu of those, here is a roundup of articles and pieces on fertility:

USA TODAY Partners with RESOLVE to Heighten Infertility Awareness

Infertility Awareness Week Reminds Us That 48.5 Million Couples Worldwide Need Fertility Help

National Infertility Awareness Week: A Chance To Support Those Facing Infertility

Infertility: When adoption is not an option

IVF versus adoption: Why ‘just adopt’ is not the answer

Please, Stop Telling Infertile Couples to “Just Adopt”

Arab Americans, African Americans, and infertility: barriers to reproduction and medical care

Is male infertility a social blindspot?

Slavery Segregation and Racism: Trusting the Health Care System Ain’tAlways Easy! An African American Perspective on Bioethics

What “Avengers” got right about Black Widow: Infertility is devastating — even for superheroes

Most Men Know Surprisingly Little About Their Own Fertility

Fertility options for transgender persons

22 Things You Should Know About Fertility

20 Things Transgender People Might Want To Know About Fertility

Cancer and Fertility

Life, Interrupted: A Young Cancer Patient Faces Infertility

How can cancer affect fertility?

March 10 is National Women and Girls HIV/AIDS Awareness Day

March 10 is National Women and Girls HIV/AIDS Awareness Day

Posted on by Grayson Schultz

Today is National Women and Girls HIV/AIDS Awareness Day.

In 2014, new diagnoses broke down like this:

  • Black women – 62%
  • Latinx women – 16%
  • White – 18%

New diagnosis rates are falling! Still, there is a lot of progress we have to make. One major issue is how there is so much stigma still associated with HIV/AIDS.

What can we do?

Take time to learn about HIV, living with HIV, and other resources. My favorites are patient activists Josh Robbins of I’m Still Josh and Brian Ledford of A Marine and HIV.

You also should check out episode 3 of our podcast with DJ D-REK.

Make sure that you take steps to protect yourself and others by using Pre-Exposure Prophylaxis (PrEP), Post-Exposure Prophylaxis (PEP) within 3 days of unprotected genital fun, and make sure to use condoms or dental dams for all genital contact you have in non-monogamous situations.

Get tested by visiting this site, texting your zip code to 566948, or calling 1-800-232-4636.

If you want to help raise awareness, you can donate a Facebook post or tweet via Thunderclap or use the tags #NWGHAAD and #bestdefense on social media.

Facts in this post come from Womenshealth.gov, the CDC, and AIDS.gov.

March is National Endometriosis Month

March is National Endometriosis Month

Posted on by Grayson Schultz

Endometriosis is incredibly painful. I don’t live with it but have friends who do and the pain they experience is hard to even witness third-person.

What is it?

Endo is a condition where the material that lines the inside of the uterus (endometrium) begins to grow outside the uterus. Usually, it seems to stay on the uterus, but it can affect other organs as well. This can create cysts, lesions, and scar tissue that has to be removed.

Pain increases with menstruation, bathrooming, and sexual activity.

Fertility is affected as well. Eggs may not be able to be released from the ovaries, may not be able to travel down the fallopian tubes, and may not be able to attach themselves to the uterine wall.

Treatments that address pain control, hormone therapy such as birth control pills, surgery, and hysterectomy may all be needed.

Where can I learn more?

ask me about my uterus

If you’d like to learn more about what endo feels like, please check out my pal Abby Norman. She has been featured by Glamour Magazine, Huffington Post, Seventeen, Forbes, The Atlantic, Bustle, and more. and has presented at conferences such at MedX and the Endometriosis Foundation of America Medical Conference.

In addition to being an excellent writer, she runs Ask Me About My Uterus. AMAMU discusses issues related to endo, miscarriage, birth control, menopause, pregnancy, menstruation, and more.

The Endometriosis Foundation of America is another great resource.

'February is National Condom Month' in black text over a photo of two female condoms, and four male condoms on a bed

February is National Condom Month

Posted on by Grayson Schultz

February is National Condom Month!

Condoms are great tools for having protected sex and come in all different kinds of varieties.

You can learn about male and female condoms here.

Communication with partners about condoms can be tricky at times, too, so here are some talking points and tips.

You can learn more about how condoms are made and their history here.

Need access to free condoms? Click here to find a location offering them near you. You can also check out the selection of condoms at our affiliate Vibrant where 100% of the proceeds go to Planned Parenthood of the Rocky Mountains.

Regardless of where you snag your condoms, make sure you protect yourself!

 

february is rare disease month

February is Rare Disease Month

Posted on by Grayson Schultz

Rare Disease Day was started in the early 2000s with the goal of raising awareness of rare diseases around the world. While RDD is February 29th – because it’s also rare! – or the 28th on non-leap-years, the whole month of February is Rare Disease Month. Between Europe and the US, over 60 million people live with a rare disease.

This year’s theme is research.

Many rare diseases face a lack of specialists who even know about these diseases which means getting a diagnosis is really difficult. Additionally, a lack of effective treatments means that diseases can progress quickly, causing pain and all sorts of life-threatening issues.

When you take into account the above, it’s no surprise that cost becomes an issue as well. This makes even more sense when you learn that nearly 80% of rare diseases have a genetic cause.

You can get involved with Rare Disease Day or find an event near you at rarediseaseday.org or rarediseaseday.us.

Guest Post: Marfan Syndrome Awareness Month

Posted on by Guest

When I say the words ‘Marfan Syndrome’ to people there are usually a few different responses that I get. There’s the classic confused face, head tilted look and that signals to me that they have no idea what I’m talking about. Then there’s the ‘oh so you’re a martian response’, followed by absolutely no laughter on my part. Then there is the surprising response ‘I know what that is!’, but that doesn’t happen very often. Myself and others though are working towards a world where the third response happens more and more, a world where I can go to my GP knowing that they will be informed about my rare genetic condition. That’s the thing that most comes along with such conditions, uncertainty. Will my doctor have heard of the condition? What symptom will pop up next? What will my test results say? You get used to it eventually but what I don’t have to get used to is looks of confusion when I say ‘Marfan Syndrome’ and that is why I’m here guest posting today.

I’m Shona and I have a rare genetic connective tissue disorder called Marfan Syndrome. Think of the connective tissues in the body as being a bit like the glue that holds everything together, these tissues are vital in maintaining the structure of the body and supporting internal organs and other tissues. As its a genetic condition most people do inherit it from a parent, 50/50 chance of an affected person passing the disorder on to a child, but sometimes spontaneous mutation occurs (the gene just mutates for no reason).

'marfan syndrome awareness month' in black text against a white background - below this are photos of Shona's scoliosis surgery, and aftermath (x-rays, her in a hospital bed), her in a wheelchair, and a photo depicting her long armspan, a classic marfan syndrome sign

Marfan is one of those conditions where everyone is affected differently, even in families where more than one person has the condition. For example, I am severely affected by Marfan but my Mum who also has the condition has more mild symptoms. There are some signs to look out for that are commonly associated with Marfan, such as: having a tall and slim body, long arms, legs and fingers, and loose (hypermobile joints). Such characteristics on their own do not always mean that you have Marfan so other signs are looked for as well, such as: small lower jaw, crowded teeth, flat feet, high roof of the mouth, skeletal deformities and heart problems. You can find more information about the signs/symptoms on the NHS Choices website.

The heart problems that can occur in Marfan make this disorder life threatening and just in my family alone we have unfortunately lost 2 people to the heart complications associated with Marfan. The connective tissues in someone’s body who has the condition are too stretchy and this can lead to some problems occurring in the heart. The main one is that the aorta, the most important artery in the heart, can stretch and widen beyond what it should and this is called an aortic aneurysm. When it stretches too much though the aorta could potentially tear or even burst, this is often a catastrophic and possibly fatal event. Many people with Marfan find themselves needing some kind of preventative aortic surgery to stop the problem before it reaches that point, myself included. My cardiologist predicts that I’ll need major open heart surgery in my early twenties to prevent my aorta from stretching to dangerous levels, I’m 19 now so I’m just hoping that my heart is kind to me and it will start behaving!

collage of scoliosis surgery related photos: upper left: a photo of Shona in hospital bed; upper right: shona post-surgery showing her spine-long scar; bottom left: an x-ray of shona's spine pre-surgery; bottom right: an x-ray of shona's spine post-surgery

I was diagnosed with Marfan when I was just a baby, my Mum knew she had the condition when I was born so doctors knew to look out for the signs, many of which I displayed. A scan of my heart then confirmed the diagnosis as it was found that my aorta was already a little too big for my age and size. I’ve had my heart monitored every year since then with MRIs every now and then to get a more detailed picture. My biggest problem that Marfan Syndrome has caused though is chronic pain, I have several secondary conditions that contribute to this pain and surgeries over the years have tried to help but have unfortunately failed.

In 2013 I had spinal fusion surgery to correct my scoliosis, the curvature of the spine, as my severe curve was causing me a lot of pain. During a nearly 6 hour surgery my surgeon used metal rods and screws to move my spine into a straighter position. I wrote about my week in hospital following the surgery on my blog at the time, in which I recorded some pain I started having in my right leg. This pain continued and at 6 months post op a CT scan was done to investigate it, the scan showed that one of the screws was sitting on a nerve and was the cause of the pain. The pain was severe whenever I sat up or stood so I spent nearly a year laying down most of the time as that’s how long it took them to re-operate to replace the screw.

Shortly after I was diagnosed with a hip deformity in both my hips, a secondary condition related to Marfan called Protusio Acetabuli. My hip sockets are too deep and as a result I have early wear and tear, cyst formation and only a few millimetres of hip socket left. At 18 years old I had my first hip replacement on my worse off right hip and it really was weird waking up on a ward full of 80 year olds! Sadly that was not my only additional diagnosis as last year I was also diagnosed with a Tarlov cyst in my spine, a cyst full of spinal fluid in my sacrum area that is eroding away the bone. Altogether this is why I use a powerchair, I can walk inside my home a little on crutches but for the most part I get around on wheels!

left: a photo of shona - she has shoulder length-reddish-brownish hair; right: a drawing of shona utilizing a wheelchair, with the same hair, an olive-green jacket and beige shirt, jeans, and black boots against an orange-ish watercolor background

I use my time to blog about all sorts of topics but these days I’m really enjoying talking about issues relating to disability such as ableism and accessibility. I also spend my time raising awareness of Marfan on my FB page, blog, and Twitter. I try and spread the word wherever I can and I’ve been lucky enough to work with The British Heart Foundation recently to try and raise awareness and share my story. So, I guess what I’m saying is that it isn’t all bad!

If you want to help me raise awareness then please do share this blog post, like my FB page, RT my awareness tweets etc. There are loads of ways in which we can share the message about Marfan during awareness month!

 

Love Your Cervix!

Posted on by Grayson Schultz

The cervix is that cute little friend in the picture above. Essentially, it is tissue that creates a neck (for lack of a better term) between the uterus and the vagina.

There are many different kinds of issues that the cervix can face – cervical cancer, infections, polyps, erosion/abrasion, endometriosis, chronic pain, and more.

January is all about cervical health – most specifically related to cervical cancer. Take care of you. Make sure to visit your healthcare teams or Planned Parenthoods for testing and regular exams. If you are between 21-65, you should be getting a pelvic exam every 1-3 years depending on your personal health, risk, and other factors.

Additionally, consider the HPV vaccine. HPV is one of the growing causes of cancers that not only affect the cervix but also the anus, vulva, penis, throat, and other conditions. If you and/or your partner are non-monogamous? Protect yourself.

Want to see real cervices or learn how to check out your own? Check out the Beautiful Cervix Project. Do note there is a lot of talk of pregnancy.

World AIDS Day

Posted on by Grayson Schultz

Today, December 1, is World Aids Day.

There is so much to share about AIDS and HIV, the virus that causes it, but let’s start with the basics.

First things first, our chat questions tonight will be all about World AIDS Day.

HIV stands for Human Immunodeficiency Virus. What it does is it attacks the CD4 T cells that helps the immune system protect you.

AIDS stands for Acquired Immunodeficiency Syndrome. This happens when the amount of your CD4 T cells drop below 200 cells per cubic millimeter of blood OR if you have what is called an opportunistic infection.

The CDC estimates that 1.2 million people are currently living with HIV in the United States. Perhaps the scarier thing is that roughly 1 in 8 don’t even know they’re carrying the virus.

Again, according to the CDC, new infections are occurring most often in men who have sex with men (all races), African-American heterosexual women, and Latinx. Transgender people also have higher infection rates, with an average 28% infection rate in transgender women in 2008. The Southern US has the highest infection rate followed by the Northeast and Midwest.

What are ways you can be exposed to HIV?

  • Blood
  • Cum or pre-cum
  • Anal fluids
  • Vaginal fluids
  • Breast milk

In order to really be exposed, though, these fluids would need to come into contact with damaged tissue, mucous membranes, or pop right on into your bloodstream.

The only way to know if you have HIV or AIDS is to get tested, especially because symptoms include things like swollen lymph nodes, rash, fever, fatigue and other issues typical of basically every stinking disease or virus ever.

There are ways of preventing transmission of the HIV virus. Pre-exposure Prophylaxis (PrEP) is meant to be taken as a daily pill by those in high-risk exposure situations such as being the partner to a person with HIV/AIDS. Obviously, this is used in combination with sexual barriers like condoms as well as testing every three months or so.

There is also post-exposure prophylaxis in case of emergencies. This consists of taking antiretroviral medications as soon as possible after exposure (within 72 hours). The person has to take this medication 1-2 times daily for a month and, even then, it’s not a guarantee for preventing the virus.

yellow text on a grey-brown background: nearly 2 in 5 people don't realise HIV can be passed on through heterosexual sex' from the world aids day/ national aids trust in the uk
Courtesy of worldaidsday.org

There is a lack of education on HIV/AIDS. In the early 1990s, in my childhood, it was incredibly important to talk about HIV/AIDS. Real treatments were coming out, the AIDS quilt was constantly being expanded, and speakers came to schools to correct misconceptions about the virus. By the mid-1990s, we had things like Rent, Philadelphia, And the Band Played On, and The Cure. Angels in America came in the early 2000s and reignited conversations about the handling of the epidemic, stigmas, and the need to educate others.

Abstinence-only education only served to combat this by eliminating real conversations like ways people could protect themselves and the need to get tested. Many people, especially in the 13-24 age range, don’t realize that getting tested is something they should do.

Tests are incredibly quick, simple, and can be done with a cheek swab or a finger prick. Testing is also confidential.

Others still don’t have access to testing resources. One of the biggest problems there is the misconception highlighted by the GOP (sorry, pals) that Planned Parenthood only does abortions. In fact, they are one of the biggest testing facilities for ALL sexually transmitted infections and many forms of cancer.

yellow text on grey-brown background that says 'HIV treatment has advanced tremendously; public attitudes are lagging behind' from the National AIDS Trust from the UK
Courtesy of www.worldaidsday.org

There is a major issue with stigma. People don’t get tested, often, because they think it’s a ‘gay men’ disease. Many people still don’t understand that everyone, regardless of whom they have sex or share sexual activities with, can get HIV/AIDS. It doesn’t matter if you’re gay, straight, lesbian, bi/pansexual, transgender, queer, etc., you can still be exposed to and get HIV.

One of the biggest problems facing the HIV-positive/AIDS population is access to healthcare. Even those who can afford to see their physicians may not be able to afford the medications. After all, let’s not forget Martin Shkreli and his price-hiking of Daraprim, a drug used by HIV/AIDS patients as well as those dealing with transplants, malaria, and a type of parasitic infection called toxoplasmosis.

If you have HIV/AIDS – or are a loved one/caregiver of someone who does – here are some important links for you:

Please visit this site to find a testing location near you or talk to your doctor.

To learn more about HIV, AIDS, and treatments: