tag:blogger.com,1999:blog-13793050077544130762024-02-20T08:58:51.993-08:00The Works of Lifelmuchihahttp://www.blogger.com/profile/09392018245078043653noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-1379305007754413076.post-12540143182578541542018-09-23T19:34:00.000-07:002018-12-30T20:09:23.368-08:00Second Hemophilia Interview<span style="font-family: "times new roman", serif; font-size: large;">My
interview with another hemophilia acquaintance.</span><br />
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times new roman" , serif;"><span style="font-size: large;">How old were you
when diagnosed with hemophilia?<o:p></o:p></span></span></b></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">I
was diagnosed with Hemophilia A in 1978; I was 5 years old.<o:p></o:p></span></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Are you
currently on factor?<o:p></o:p></span></span></b></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Yes<o:p></o:p></span></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Do you think
advocacy is important for women (in general)?<o:p></o:p></span></span></b></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Absolutely.
Even in 2018, the inequality between men and women is still present.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">It
is prevalent in healthcare across the board.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">In
hemophilia, women are still often treated like second class citizens… we are
refused testing, treatment, and frankly respect in our HTC system.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">There
is a wide range of care, or lack of, between centers and this needs to be
corrected. <o:p></o:p></span></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Is there
anything you would change about hemophilia or the community (past, present, and
future)?<o:p></o:p></span></span></b></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">I
think there are many changes I would make if I could.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Obviously
the past, I lost my own father to tainted blood products.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">I
don’t believe our physicians and treatment teams should be profiting from our
treatment.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">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.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Greed
and profit often outweigh patient care.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">The
politics within the industry and community are counterproductive to achieving
true unity among our community.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">We
continue to let industry, nonprofits, and politics divide us.<o:p></o:p></span></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times new roman" , serif;"><span style="font-size: large;">What are your
values about bleeding disorders, diagnosis and treatment?<o:p></o:p></span></span></b></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">I
believe we need more awareness to the general public.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">We
need to be dispelling myths in a more proactive way.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">In
terms of women and bleeding disorders; we need to be more aggressive about
educating medical students and healthcare professionals.<o:p></o:p></span></span></div>
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<span style="font-size: large;"><b style="mso-bidi-font-weight: normal;"><span style="font-family: "times new roman" , serif;">Why do you think
it is hard for women to get properly diagnosed or receive treatment?</span></b><span style="font-family: "times new roman" , "serif";"> <o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Changing
decades of beliefs is difficult.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">The
CDC has taken a firm stance and changed policies on diagnosing and treating
women.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Unfortunately,
many HTCs roll their eyes when women cite MASAC on the subject.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">MASAC
sets guidelines, but they cannot set policy.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">To
change the way women are treated is going to take a change of policy at the
federal level.<o:p></o:p></span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;"><br /></span></span>
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;"><b>What are the symptoms of hemophilia?</b></span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Symptoms range by individual, but generally are excessive bruising, joint and muscle bleeds, heavy menstrual bleeding, and nose bleeds.</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;"><b>What should prompt a woman to get a proper diagnosis as a carrier or full on hemophilia?</b></span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Most of the leading researchers in women with hemophilia believe that if a woman is a carrier; she has a bleeding disorder.</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">It's just a matter of severity.</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">If a girl or woman is a known carrier then having her factor levels tested and knowledge of symptoms is imperative.</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Most women who are diagnosed as an adult already have joint damage.</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Preventing these chronic issues begins with early diagnosis and education.</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;"><b>How can you tell the difference between severity (mild, moderate, or severe)?</b></span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Clinically, the difference is factor levels.</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;"><1% = severe, 1-5% = moderate, and >5% = mild.</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">In reality, levels mean little in relation to bleeding symptoms.</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">You can be clinically mild, but bleed like a severe or vice-versa.</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;"><b>Do you think all doctors should learn more about bleeding disorders, even if just knowing about hemophilia?</b></span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Absolutely, having a general knowledge of bleeding disorders across all practices will increase proper diagnosis.</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">It will reduce complications and deaths due to excessive bleeding in the general population.</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;"><br /></span></span></div>
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<br />lmuchihahttp://www.blogger.com/profile/09392018245078043653noreply@blogger.com0tag:blogger.com,1999:blog-1379305007754413076.post-71228596598033951502018-09-23T19:33:00.001-07:002018-12-30T20:08:19.958-08:00First Hemophilia Interview <span style="font-family: "times new roman", serif; font-size: large;">My
interview with a hemophilia acquaintance.</span><br />
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<br /></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times new roman" , serif;"><span style="font-size: large;">How old were you
when diagnosed with hemophilia?<o:p></o:p></span></span></b></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">38
years old<o:p></o:p></span></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Are you
currently on factor?<o:p></o:p></span></span></b></div>
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<span style="font-size: large;"><span style="font-family: "times new roman" , serif;">I have
prescription, but no treatment center.<o:p></o:p></span></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times new roman" , serif;"><span style="font-size: large;">If not on
factor, how do you handle bleeds and such?<o:p></o:p></span></span></b></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">I
use herbal medicine<o:p></o:p></span></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Do you think
advocacy is important for women (in general)?<o:p></o:p></span></span></b></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Absolutely.
So many mom’s don’t even think to consider themselves as patients.<o:p></o:p></span></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Is there
anything you would change about hemophilia or the community (past, present, and
future)?<o:p></o:p></span></span></b></div>
<div class="MsoNoSpacing">
<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">The
misconception that women can be carriers with symptom, but go untreated because
they are xx chromosome. <o:p></o:p></span></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times new roman" , serif;"><span style="font-size: large;">When should
women get diagnosed for hemophilia, even carriers?<o:p></o:p></span></span></b></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Birth.
Just like most of the men.<o:p></o:p></span></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times new roman" , serif;"><span style="font-size: large;">Why do you think
it is hard for women to get treatment?<o:p></o:p></span></span></b></div>
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<span style="font-size: large;">Because our hormones
affects our levels.</span><span style="font-size: 13pt;"><o:p></o:p></span></div>
<br />lmuchihahttp://www.blogger.com/profile/09392018245078043653noreply@blogger.com0tag:blogger.com,1999:blog-1379305007754413076.post-90165300829919079742017-07-09T09:39:00.001-07:002019-05-01T16:33:45.488-07:00Yes, I am a bleeder (old November 2011 post)<span style="font-family: Times, Times New Roman, serif; font-size: large;">This was originally a post from November, though I slightly edited a little.</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Yes, I am a bleeder</span></span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I may be a normal girl</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I might act like you</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">But I am not near like you</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I am not the same as you</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I am unable to be a normal, average woman</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">You will never understand me ¶</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><br />
Yes, I am what is called a bleeder</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">This means I bleed internally</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Which you would never understand</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">From an outside perspective</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I cannot be like everyone else</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I am not able to play sports</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I am very limited on what I can do ¶</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif; font-size: large;">
<span style="font-family: Times New Roman, serif;">You have never seen me at my worst </span></span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">You may not ever want to see it</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Because you might end up not understanding</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Or maybe you will understand, but </span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">It's all in the eye of the beholder ¶</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><span style="font-family: Times New Roman, serif;"><br /></span>
<span style="font-family: Times New Roman, serif;">Either way, I am who I am </span></span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I have accepted the fact that I am the person </span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I strived to be the best I can and never give up </span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I cannot change myself or my bleeding disorder</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">For anyone because I have accepted it</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Nothing can change me or my way of thinking ¶</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><span style="font-family: Times New Roman, serif;"><br /></span>
<span style="font-family: Times New Roman, serif;">Yes, I am a bleeder, but it has been </span></span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Very challenging to rise to others' expectations</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Most of which I am not able to achieve or accomplish</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">No one has ever felt what it is like to </span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Have a bleeding disorder, been through all the bleeds </span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I have ever had and know the feeling of being left out ¶</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><span style="font-family: Times New Roman, serif;"><br /></span>
<span style="font-family: Times New Roman, serif;">I always had a hard time tying to</span></span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Accomplish or achieve my goals</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">But I find a way, stick to my strong willed</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Determination and keep going until I finish </span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I always do the best I can and to the best</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Of my abilities and nothing can stop me ¶</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><span style="font-family: Times New Roman, serif;"><br /></span>
<span style="font-family: Times New Roman, serif;">I have been questioned about why I can't</span></span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Play sports, but I tell them I am a bleeder</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Therefore, I have a tendency to bleed excessively</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">And have to infuse my factor right away </span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Or I could potentially die from all the</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Bleeding internally, it's not something </span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">You can see from the outside ¶. </span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><span style="font-family: Times New Roman, serif;"><br /></span>
<span style="font-family: Times New Roman, serif;">I have always gotten bruises and most of</span></span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Those bruises come with hematomas underneath</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">It is not easy to explain how I got the bruise</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Or saying I bruise easily because I am a bleeder</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">One day you will understand </span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">What it is like to be in my shoes ¶</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><span style="font-family: Times New Roman, serif;"><br /></span>
<span style="font-family: Times New Roman, serif;">Understand what I go through each and </span></span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Every day of my life</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">See everything I go through from my eyes</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">But until that day, letting the pieces fall </span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">In place is all there is to do ¶</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><span style="font-family: Times New Roman, serif;"><br /></span>
<span style="font-family: Times New Roman, serif;">I cannot change my own bleeding disorder</span></span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I can live with and accept it as is</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Or I can let it keep me down</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">And never accomplish anything in life</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I have overcome that obstacle and will</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">Stay above it the rest of my life</span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: large;">No matter what anyone else says ¶</span>lmuchihahttp://www.blogger.com/profile/09392018245078043653noreply@blogger.com0