Thursday, August 18, 2011

Kiss My Acne

I've been suffering from acne for a few months now. Suffering might be a bit dramatic, considering I actually know what "suffering" means now. But still, having acne is no fun. I've never had skin problems like this before. Yea sure I'll have the occasional zit pop up, but never the "A" word. But here it is, and I couldn't hide from it.

So yesterday I went to Dr. Derm for an acne consultation. She is a well respected dermatologist that both my parents go to regularly. My sister and I both saw her as children. My sister for eczema and I had a mole removed. In my early teens Dr. Derm moved into the house next to my parents and I had quite a crush on her eldest son.

Anyway, I hadn't been a patient of hers since I was 9 when I had that mole removed. Obviously a lot has happened since then. Even though I was going to her for acne, I knew we would have to talk about porphyria because it would be necessary to make sure any medications are safe for me to take or use.

Since she does not accept insurance, her new patient paperwork was minimal and didn't even ask for an in-depth health history. The only place I could mention porphyria was under "Are you allergic to any medications? If so please list them." Well technically I'm not allergic to I simply stated "Cannot take many medications due to Porphyria." Short. Sweet. To the point. I handed my paperwork back to the receptionist and was soon in an exam room discussing my concerns to the nurse.

When she got to the allergic medications question, she stumbled over the word "porphyria", indicating she had never heard of it before. Nothing new. I didn't get into specifics with her about it, after all I was here about my acne. She left only to come back a handful of times with a list of questions Dr. Derm needed answers to before she came into my room. Maybe most people would have thought this was annoying, but to me, I was glad to know the Dr. was even reading my chart before she saw me... I've learned most don't.

When it was my turn to visit with Dr. Derm, she came into the room and immediately said as she sat down, "So you have the rarest of the rare." She continued our appointment by asking what felt like thousands of very detailed questions regarding my symptoms and attacks - wanting to know everything. She explained that she treats the body as a one, and although she works with the skin, she understands that it is part of a whole. She was well versed in porphyria - said she has a special interest in it and was sympathetic to my story. Sorry that the medical community had failed for me, and seemed embarrassed by her fellow colleges. Above all, she wanted to make sure I was getting the best care - was happy to hear that a team of doctors at Mt. Sinai had reviewed my case and that I had been evaluated by neurologists, cardiologists, gastrointerologists....

Finally, she looked at my acne. Yes, it is severe and a good thing I am taking care of it. She apologized for not being able to give me any direction or Rx at the time of my appointment. She said she wanted to make sure she knew everything about porphyria, and not just past research or case studies, but what had been published TODAY. And then she said something that I haven't heard from any other doctor - all 50 + of them that I've seen. And she said this:

"You have probably done a lot of research on your own about your condition, and it's probably saved your life. But now, I am your doctor and I want to take that burden from you. It is my job to know how to treat you safely and effectively. You can now take that weight off of your shoulders, and I will put it on mine."

I could have kissed her.

So I left her office yesterday with no medications, Rx, lotions or creams, but something much more valuable. Peace of mind. For I know that she is going to do her research, and I know she will care for me.

On a side note: She said that with my light sensitivity, I should be wearing scarves to cover my neck and chest along with opera gloves to protect my hands and arms when I'm in the car. Windows in cars do not prevent UVA rays from passing through, and those can cause damage to the skin, especially in people with light sensitivity. So I'm using these photos as inspiration. I'm bringing the scarf back!

And the riding gloves are totally in right now!

If Becks is rocking this look, so can I!


  1. yay! that's amazing! If only more doctors were like her! I'm so happy to see that you found someone so compassionate and who's willing to try to understand! Girl, you rock that scarf & those gloves & make all those other women jealous! (:
    Take care!

  2. Hi Natalie. Thanks for reading! Yes, she is a true doctor - a person with a life purpose of helping others - and I'm so glad she was accepting of me and the porphyria. I have since stocked up on cute scarves, mostly from Target!, and am wearing them when outside or driving. It's a bit hot here in the Atlanta August weather, but I'd rather be a bit warm than have damage to my skin. And it does dress up a plain T-shirt!

    I haven't heard back from Dr. Derm about the acne, I guess she is still doing research, but I'll be sure to share her recommendations.

  3. I know this post is really old but I stumbled upon it as I was just recentlu diagnosed with AIP. While not typically a symptom of AIP, I have always been very light sensitive. Not to the point where I will blister from exposure but I will get severe sunburns from very short periods in the sun without sunscreen. Because I hate the sensation of tons of layers in the heat, I decided about 10 years ago that I was going to singlehandedly bring back the gorgeously adorned parasols of the Victorian era. Well my master plan failed to pan out on a grand scale and yes I do sometimes get some curious looks but...I wouldny give them up for anything! The parasols alloe me the freedom to wear a long flowy skirt and tank top to try and stay cool, yet still manage to keep my skin completely covered at all times. ;)