Sunday, September 23, 2018

Second Hemophilia Interview


My interview with another hemophilia acquaintance.

How old were you when diagnosed with hemophilia?
I was diagnosed with Hemophilia A in 1978; I was 5 years old.
Are you currently on factor?
Yes
Do you think advocacy is important for women (in general)?
Absolutely. Even in2018, the inequality between men and women is still present.
It is prevalent in healthcare across the board.
In hemophilia, women are still often treated like second class citizens… we are refused testing, treatment, and frankly respect in our HTC system.
There is a wide range of care, or lack of, between centers and this needs to be corrected.
Is there anything you would change about hemophilia or the community (past, present, and future)?
I think there are many changes I would make if I could.
Obviously the past, I lost my own father to tainted blood products.
I don’t believe our physicians and treatment teams should be profiting from our treatment.
The 340b program was a good idea, in theory, but as we have seen there is little oversight and the system is full of corruption.
Greed and profit often outweigh patient care.
The politics within the industry and community are counterproductive to achieving true unity among our community.
We continue to let industry, nonprofits, and politics divide us.
What are your values about bleeding disorders, diagnosis and treatment?
I believe we need more awareness to the general public.
We need to be dispelling myths in a more proactive way.
In terms of women and bleeding disorders; we need to be more aggressive about educating medical students and healthcare professionals.
Why do you think it is hard for women to get properly diagnosed or receive treatment?
Changing decades of beliefs is difficult.
The CDC has taken a firm stance and changed policies on diagnosing and treating women.
Unfortunately, many HTCs roll their eyes when women cite MASAC on the subject.
MASAC sets guidelines, but they cannot set policy.
To change the way women are treated is going to take a change of policy at the federal level.

What are the symptoms of hemophilia?
Symptoms range by individual, but generally are excessive bruising, joint and muscle bleeds, heavy menstrual bleeding, and nose bleeds.
What should prompt a woman to get a proper diagnosis as a carrier or full on hemophilia?
Most of the leading researchers in women with hemophilia believe that if a woman is a carrier; she has a bleeding disorder.
It's just a matter of severity.
If a girl or woman is a known carrier then having her factor levels tested and knowledge of symptoms is imperative.
Most women who are diagnosed as an adult already have joint damage.
Preventing these chronic issues begins with early diagnosis and education.
How can you tell the difference between severity (mild, moderate, or severe)?
Clinically, the difference is factor levels.
<1% = severe, 1-5% = moderate, and >5% = mild.
In reality, levels mean little in relation to bleeding symptoms.
You can be clinically mild, but bleed like a severe or vice-versa.
Do you think all doctors should learn more about bleeding disorders, even if just knowing about hemophilia?
Absolutely, having a general knowledge of bleeding disorders across all practices will increase proper diagnosis.
It will reduce complications and deaths due to excessive bleeding in the general population.



First Hemophilia Interview


My interview with hemophilia acquaintance.

How old were you when diagnosed with hemophilia?
38 years old
Are you currently on factor?
II have prescription, but no treatment center.
If not on factor, how do you handle bleeds and such?
I use herbal medicine
Do you think advocacy is important for women (in general)?
Absolutely. So many mom’s don’t even think to consider themselves as patients.
Is there anything you would change about hemophilia or the community (past, present, and future)?
The misconception that women can be carriers with symptom, but go untreated because they are xx chromosome.
When should women get diagnosed for hemophilia, even carriers?
Birth. Just like most of the men.
Why do you think it is hard for women to get treatment?
Because our hormones affects our levels.

Sunday, July 9, 2017

Yes, I am a bleeder (old November 2011 post)

It is an old post from November 2011, which after editing a tiny bit on the original; it did not want to show up
Instead of trying to figure out my issue; I just decided to repost and be done with it.

Yes, I am a bleeder
I may be a normal girl
I might act like you
But I am not near like you
I am not the same as you
I am unable to be a normal, average woman
You will never understand me ¶

Yes, I am what is called a bleeder

This means I bleed internally
Which you would never understand
From an outside perspective
I cannot be like everyone else
I am not able to play sports
I am very limited on what I can do ¶

You have never seen me at my worst 

You may not ever want to see it
Because you might end up not understanding
Or maybe you will understand, but 
It's all in the eye of the beholder ¶

Either way, I am who I am 

I have accepted the fact that I am the person 
I strived to be the best I can and never give up 
I cannot change myself or my bleeding disorder
For anyone because I have accepted it
Nothing can change me or my way of thinking ¶

Yes, I am a bleeder, but it has been 

Very challenging to rise to others' expectations
Most of which I am not able to achieve or accomplish
No one has ever felt what it is like to 
Have a bleeding disorder, been through all the bleeds 
I have ever had and know the feeling of being left out ¶

I always had a hard time tying to

Accomplish or achieve my goals
But I find a way, stick to my strong willed
Determination and keep going until I finish 
I always do the best I can and to the best
Of my abilities and nothing can stop me ¶

I have been questioned about why I can't

Play sports, but I tell them I am a bleeder
Therefore, I have a tendency to bleed excessively
And have to infuse my factor right away 
Or I could potentially die from all the
Bleeding internally, it's not something 
You can see from the outside ¶. 

I have always gotten bruises and most of

Those bruises come with hematomas underneath
It is not easy to explain how I got the bruise
Or saying I bruise easily because I am a bleeder
One day you will understand 
What it is like to be in my shoes ¶

Understand what I go through each and 

Every day of my life
See everything I go through from my eyes
But until that day, letting the pieces fall 
In place is all there is to do ¶

I cannot change my own bleeding disorder

I can live with and accept it as is
Or I can let it keep me down
And never accomplish anything in life
I have overcome that obstacle and will
Stay above it the rest of my life
No matter what anyone else says ¶

Saturday, November 26, 2011

My Thanksgiving Baking Project! :)

I love to bake and my contribution for thanksgiving this year was cookies. :)
I made 2 different types of cookies except I do not HAVE a sweet tooth at all.
I never liked sweets as a kid and really don't even now as an adult.
I will eat like 5-6 mini Reese's peanut butter cups or a small candy of some sort every once in a great while, meaning maybe every 4-6 months.
I am very conscious about my teeth and brush them roughly 5 times a day.
I have never had a cavity and I do not want to get one.
I did not even eat a sample of either cookie.

I love the smell of the baking cookies; it gives a very homey and holiday smell to my senses.
I have always loved to cook and bake since I was a kid; it is one of my favorite hobbies. 

These dark ones are called Double Chocolate Chunk Mint Cookies; they have unsweetened cocoa powder, 6 oz (6 squares) of semi-sweet baking chocolate, and a little peppermint extract.
They look burnt, but it's just the chocolate in them. :)










These ones are Soft Snickerdoodle cookies. I found a recipe that does not use any shortening in the dough.
Before they are baked, these cookies are dipped and rolled in a sugar-cinnamon coating.