Thank You, Queen Latifah. That Was A Perfect Amount of Scleroderma

When it was announced Queen Latifah would be talking about her mom’s diagnosis about scleroderma on her show, I was skeptical.  First, I’m going to tell you why I liked it, hoping she will read it or someone will tell her about it.

 

Scleroderma does not only devastate the patient.  I have watched my family, watch me go through procedures, unknown prognoses and loss of abilities.  I see how scleroderma hurts their heart and soul.  I comment Queen Latifah for keeping the news to herself, and focusing on her family, especially her mom.  And if you are reading this post, Queen Latifah, thank you for not only sharing with your audience and the world about scleroderma; thank you for showing them that as hard as it may be, there is more to you and your mom than scleroderma.

 

Now, what I loved about her segment:

 

It was short.  She relayed a heart-felt message and went forward with her show.

 

She  said, “There is treatment.”  The last 20 years, every time scleroderma is mentioned, there are real pictures of people with scleroderma enduring the most painful, awful parts- not that it is bad- but because there is treatment, I believe damage can be prevented.  So often, patients with scleroderma are portrayed as victims with no hope.  And yes, I’m a realist, I know that no hop can be very real for many patient with scleroderma, but we need to stop that and create hope.  For example, when my hands were cur;ling, I was received occupational therapy once a week that helped me manage pain and keep range of motion.  When I moved, and got a new occupational therapist, she informed me I was not worth the funds required to keep me moving and I should just sit back and face my fate.  I will never know if I could have maintained my hands, because she never gave me a chance.  Currently, I have scarring in my lungs from pulmonary fibrosis.  Doctors believe that exercise is helping my lungs work better.  Luckily, I can exercise my lungs and I don’t need assistance, like I needed with my hands.

 

Look, as a patient, I don’t need a long segment about the worst of scleroderma.  It will get the channel changed.  Let’s face it, we are a shiny, “happy” culture that has the power to shut off the ugly in life.  Scleroderma is not rainbows and unicorns.  Queen Latifah gave an effective message, mentioned that it could be treated and gave her audience a place to find more information.

 

Queen Latifah’s mom is fighting for her life.  How she did her message was perfect.  No one should be expected to speak through tears on camera.  Thank you Queen Latifah, for sharing a piece of your journey and  making scleroderma a topic of conversation around the world.