Invisible Disabilities

Invisible Disabilities

My Story
Fran
Fran
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views

Not All Disabilities are Visible.

I have contemplated and debating publishing my first article. Writing has always been something that has been therapeutic for me. I am a very confident, strong young woman with my whole life ahead of me. However, it is time for me to acknowledge something very personal to me that up until now besides my family and three of my good friends.

There is no manual on how to be a successful person with a disability. The piece about my disability I do typically disclose is that I was born with a condition called congenital hydrocephalus. The way it affects people varies. I am thankful that I am one of the people that can function on a relatively normal level—for that I am eternally grateful.

The biggest obstacle I have had to overcome/learn to adapt to involve spatial relations. What people do tend to notice are my hand tremors—which I also attribute to my mental health battle with anxiety. I also learned how to ride a bike a bit later than those the same age. To this day, I am unable to drive myself independently and at this point, I may or may not ever be able to drive a car independently. Up until now, I have been ashamed and embarrassed that I have been unable to drive independently. I have been ashamed and embarrassed by something I cannot change about myself.

I read an interesting article that I urge you to read—especially if you care about me in any capacity. I want people to understand more about hydrocephalus—there are less than 200,000 cases diagnosed in a year. I have a VP shunt which was first placed the day I was born—however; it wound up getting infected the second day and a new one had to be placed. To this day I have only had two shunt revisions. The second revision was back in 1997 or 1998 when I was two or three years old. The most recent revision was done back in December 2008. I have had this current shunt for less than ten years. Others diagnosed with hydrocephalus can go through many revisions.

I urge you to research about congenital hydrocephalus and hydrocephalus in general. I would also like to invite you to ask me questions about my condition. From this day forward, I am no longer allowing my condition to embarrass me. I am a strong, confident, beautiful twenty-two-year-old young woman who is so much more than a medical condition.

Cover Image Credit: https://www.pinterest.com/pin/428475352032338581/?lp=true

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Everything You Will Miss If You Commit Suicide

The world needs you.
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views

You won’t see the sunrise or have your favorite breakfast in the morning.

Instead, your family will mourn the sunrise because it means another day without you.

You will never stay up late talking to your friends or have a bonfire on a summer night.

You won’t laugh until you cry again, or dance around and be silly.

You won’t go on another adventure. You won't drive around under the moonlight and stars.

They’ll miss you. They’ll cry.

You won’t fight with your siblings only to make up minutes later and laugh about it.

You won’t get to interrogate your sister's fiancé when the time comes.

You won’t be there to wipe away your mother’s tears when she finds out that you’re gone.

You won’t be able to hug the ones that love you while they’re waiting to wake up from the nightmare that had become their reality.

You won’t be at your grandparents funeral, speaking about the good things they did in their life.

Instead, they will be at yours.

You won’t find your purpose in life, the love of your life, get married or raise a family.

You won’t celebrate another Christmas, Easter or birthday.

You won’t turn another year older.

You will never see the places you’ve always dreamed of seeing.

You will not allow yourself the opportunity to get help.

This will be the last sunset you see.

You’ll never see the sky change from a bright blue to purples, pinks, oranges and yellows meshing together over the landscape again.

If the light has left your eyes and all you see is the darkness, know that it can get better. Let yourself get better.

This is what you will miss if you leave the world today.

This is who will care about you when you are gone.

You can change lives. But I hope it’s not at the expense of yours.

We care. People care.

Don’t let today be the end.

You don’t have to live forever sad. You can be happy. It’s not wrong to ask for help.

Thank you for staying. Thank you for fighting.

Suicide is a real problem that no one wants to talk about. I’m sure you’re no different. But we need to talk about it. There is no difference between being suicidal and committing suicide. If someone tells you they want to kill themselves, do not think they won’t do it. Do not just tell them, “Oh you’ll be fine.” Because when they aren’t, you will wonder what you could have done to help. Sit with them however long you need to and tell them it will get better. Talk to them about their problems and tell them there is help. Be the help. Get them assistance. Remind them of all the things they will miss in life.

For help, call 1-800-273-TALK (8255).

Cover Image Credit: Brittani Norman

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A Second Person Has Achieved Long-Term Remission Of The HIV Virus

A second man has had long term remission of the HIV virus.

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Over a decade after the first man, known as the Berlin Patient, was declared HIV-free, another patient may also be cured. Though it's too early for scientists to say for sure, the London Patient has been in a long term remission for around 18 months without the help of medication. Both men were treated with a bone marrow transplant. However, these stem cells carried a rare mutation in the genes that affect the production of the CCR5 protein, which HIV viruses latch onto to enter the cell. The virus cannot latch onto the mutated version of the protein, thus blocking its entry into the cells.

With the transplant of these HIV resistant genes, the body effectively builds a new immune system free of the virus.

After the Berlin Patient went into remission, scientists tried and failed to replicate the cure and were unable to until the London Patient, whose HIV count has reduced into undetectable numbers. While this is extremely helpful, bone marrow transplants are not a viable option to cure all HIV infected people, as it is an extremely risky process and comes with many side effects. Even so, scientists are developing ways to extract bone marrow from HIV infected people, genetically modifying them to produce the same mutations on the CCR5 gene or the inability to express that gene at all, and then replacing it back into the patient so they can still build resistance without the negative effects of a bone marrow transplant. There have also been babies whose genomes have been edited to remove the CCR5 gene, allowing them to grow up resistant to HIV.

This does not eliminate the threat of the HIV virus, however.

There is another strand of the virus, called X4, that uses the CXCR4 protein to enter the cell. Even if the editing of the CCR5 allows immunity against one strand, it is possible for a person to be infected with the X4 strand of the virus. Despite this, immunization against one strand could save a countless number of lives, as well as the vaccine that is currently in the stages of development for HIV. Along with the London Patient, there are 37 other patients who have received bone marrow transplants, six of which from donors without the mutation.

Of these patients, number 19, known as the Dusseldorf Patient, has been off anti-HIV drugs for 4 months. It may not be a complete cure, but it is definitely a step in the right direction.

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