HIV doesn't just exist on World AIDS Day!

I do not live with the diagnose myself, but as a huge fan of Queen and Freddie Mercury, HIV is something that's very close to my heart. As most of you know, AIDS complications claimed Freddie's life in 1991, and apart from very few of his friends and family, no one knew about his condition until the day before he died. At the time, HIV was so surrounded by a lot of stigma and fear, in comparison to today, very little was known about the condition, the effective medicines had not yet been discovered- it came in 1996, at least here in Sweden.
At the time of Freddie's illness, HIV was a death sentence for a lot of people who tested positive, some were fortunate to survive until the modern medicines came, some of them are alive to this day and doing well!

Much has changed since those days, effective medicines are available today, more and more people who are HIV+ have access to the medicines, but still to this day, there are people who suffer in silence and keep their status a secret out of fear of how people around them will react. We had a case here not long ago, a famous singer, he kept his status secret for 10 years, not even his band members knew! He had no support, a heavy burden to carry and he'd hide his medicines, not take them on the right times and he'd be more ill than if he had been looking after himself better. A few years ago he came out, he's getting a lot of support from fans and the rest of the society and he's and doing better, taking his medicines properly and taking better care of himself.
I feel sad for him though, and for others in his situation. HIV isn't like the flu, it isn't airborne, you can't get HIV from giving someone a hug or being there for them. You don't get HIV+ from spreading awareness of the condition and educating yourself and people around you!

It is time to end the stigma once and for all! And it's time to raise more awareness! HIV/AIDS has one awareness day, December 1st is World AIDS Day! But yet, it's barely mentioned in media, you don't see TV channels go red for awareness like they do pink in October for breast cancer. You don't see the red ribbon or other awareness items being sold everywhere like you see pink ribbons and items. It's time for a change!

HIV doesn't care who you are, it doesn't care whether you're homosexual, bisexual, heterosexual, asexual, man, woman, transgender, transexual, young or old, it doesn't care if you go to church every Sunday or if you are an IV drug addict living on the streets. Sure there are some ways of life that will increase your risk of contracting the virus, such as sharing needles, visiting tattoo parlors that aren't serious about hygiene, have sex with random people without using a condom and so on. But in the end, knowing your status and being aware and educated can get you a long way! Don't share needles, only go to serious tattoo parlors if you want to have a tattoo, use a condom if you have sex with a new partner, if you donate blood, make sure everything used is completely new and not reused, if you receive blood, make sure it's properly tested for any blood transmittable diseases.
Sadly, blood donation and transfusion is a way for the virus to spread, especially in poor areas of the world- it's one of the major causes of the infection in some poor areas of China for example.

HIV isn't a gay disease or an IV drug use disease, it's an issue everyone needs to be aware of and fight against!

HIV doesn't just exist on World AIDS Day! It exists every day! Don't be afraid to reach out to someone you know who is affected, or reach out to someone if you're affected yourself!

Now I shall get off my soapbox and keep listening to the most epic album ever made: Queen, Innuendo!

I am by no means religious, I am in fact an atheist, but this song is epic in many ways! It's from Queen's album Innuendo and was recorded just months before AIDS complications claimed Freddie's life, he was very sick at the time the album was recorded, yet he pulled it off brilliantly!




This is also a very good documentary from 1988 about the global impact of AIDS, it's well worth a watch and it's in English: Cross Over, The Global Impact Of AIDS

Ehlers-Danlos Syndrome, what is it?

In light of May being Ehlers-Danlos Syndrome Awareness month, I shall be sharing some information about the syndrome in some different posts throughout the month. I took most of this post from another blog that I'm running, just to save some time as I saw no reason to write the same thing twice.

Ehlers-Danlos Syndrome, often simply referred to as EDS is a genetic connective tissue disorder where one or more types of collagen is affected. There are different types of Ehlers-Danlos Syndrome: Classical, Hypermobility, Vascular, Kyphoscoliosis, Arthrochalasia and Dermatosparaxis.

Hypermobility type is the most common type, followed by Classical type. Vascular Ehlers-Danlos Syndrome is considered the most severe out of the "common" types of Ehlers-Danlos Syndrome and that's due to the weakening of blood vessels and organs that increases the risk for aneurysms and dissection.

Kyphoscoliosis, Arthrochalasia and Dermatosparaxis type are all very rare, between them all there may be as few as 100 cases confirmed.

Symptoms of Ehlers-Danlos Syndrome ranges from mild to severe and it isn't uncommon to have crossover symptoms from another type. The wise are still arguing whether you can have only one type of Ehlers-Danlos Syndrome or if you can indeed have more than one type. I personally prefer to say someone has one type, with crossover symptoms of another type, but I am no doctor.

The hallmark of any type of Ehlers-Danlos Syndrome is joints that can move beyond normal range of motion, and some kind of skin involvement, the most known being hyperelastic skin. Skin involvement also includes velvety soft skin, a doughy feeling, too much skin, abnormal scarring, striae and translucent skin. You can have one or more of the skin symptoms.

Example of joint hypermobility that I have

Example of scarring and striae on my shoulder area

Ehlers-Danlos Syndrome also causes a lot of pain for many patients, often both chronic and acute pain and it may be very complex to treat as it's not uncommon to be either very sensitive or resistant to medicines. It is sadly all too common that doctors don't understand the pain, and as it for the most part can not be seen on imaging, patients are often labelled as drug seekers or have their pain labelled as psychological when it's very much physical. It can take a long time to find a doctor who understands the complexity and to get a good pain management.

Ehlers-Danlos is so much more than skin and joints though, you may also have some form of dysautonomia, Chiari malformation, Cervical instability, pelvic floor prolapse, IBS, heart problems (mostly mitral valve prolapse) or early onset arthritis for example.

You are born with Ehlers-Danlos Syndrome but for some, symptoms don't develop until later in life, or the symptoms are so mild in childhood that you mistake them for something else, like claiming the pain is just growing pain, it's also common that people get misdiagnosed with Fibromyalgia when they do in fact have Ehlers-Danlos Syndrome. 

If you suspect you or a loved one may have Ehlers-Danlos Syndrome, talking with your doctor is the first step to make. Depending on your location, where and by whom you're diagnosed may vary.

Pages to learn more about Ehlers Danlos Syndrome:

http://ednf.org/

http://hypermobility.org/

 

Wearing green for FOP!

Today I'm wearing green, and my green silicone bracelet from Ali's Army! Ali is a young girl in America living with the very very rare condition FOP or Fibrodysplasia Ossificans Progressiva which basically means her muscles and connective tissue is slowly but surely turning into bone and will eventually, unless a cure or treatment is found, make her entire body rigid. It is a very painful and disabling condition and very little is known about it, much due to how rare it is.
Surgery to remove bone? Sadly it tends to trigger more bone growth rather than easing the problem, even a light bump against the body can trigger an inflammation and cause more bone growth. FOP is one of the rarest conditions known to man and more research and awareness is needed to help those who are affected.
To learn more about FOP, please visit http://www.ifopa.org/what-is-fop/overview.html educate yourself, wear green and spread the word!

To support Ali's Army, visit http://www.alis-army.org/

I joined the fight! Have you?

Because awareness matters!

Those of you reading this who are on Facebook. I've found this great cause, and it would make my and many other's day if you care enough to join and help spread the word to everyone you know!

http://www.causes.com/causes/244658-official-national-marfan-foundation-cause

Together we can make a difference!

For some reason the link doesn't become a link when I add hyperlink, but the title of this blog post will also take you to the cause.

Now let's beat at least ONE FarmVille cause! ;)

Because awareness matters!