Saturday, April 6, 2013

PharmaNAC - guest post by Rachel Johnson

Today's post is a guest post from Rachel Johnson, PWS parent and President of Team Hopefull: Fighting Prader-Willi Syndrome Together. Rachel wanted to share her experience with the supplement PharmaNAC, which we first learned about at the FPWR conference back in November. Here's her testimony!
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Who has a child or loved one with PWS who is a skin picker or hair puller? Ok…let me count the hands…so that is almost everyone. Our Ellie started pulling her hair out when she was about 18 months old. She is now 6 and we have tried EVERYTHING to curb this behavior. The three words you would hear the most in our house have been “Ellie, no hair!” We heard a lot about PWS and skin picking but not much about hair pulling so we did not think this was a PWS “thing.” In fact, just between you and me, I’m also a hair puller!  So I thought she pulled her hair because I did.

When we finally realized this was a PWS issue and discussed it with Dr. Angulo (a PWS specialist and endocrinologist), he recommended using an N-acetylcysteine supplement. We looked into this and found research that supported the use of this supplement for people with trichotillomania (compulsive hair pulling); so we decided to try this with Ellie. Unfortunately, it didn’t seem to work at all. She could not swallow the pill form we bought at the vitamin store so we had to break it up into her yogurt. It smelled and tasted terrible! She was such a trooper and would swallow the yogurt because it was supposed to help her. We finally decided to stop trying. We started her on anxiety medicine and hoped that this would help. It didn’t.

A short time later, we attended the Foundation for Prader-Willi Research conference and listened as Dr. Miller (another PWS specialist and endocrinologist) talked about PharmaNac’s effervescent form of N-acetylcysteine. As the great Oprah Winfrey once said, we had a light-bulb moment. The medicine was oxidizing when we would break the capsules, becoming ineffective. PharmaNac makes an effervescent tablet to prevent this oxidation. We decided to try N-acetylcysteine with the PharmaNac brand. We were amazed that within a short period of time that Ellie’s hair pulling decreased significantly. It is not completely gone, but it is not interfering with her--or our--daily lives anymore either.

image courtesy of amazon.com


I was so excited about the results that I called the company to find out how we could carry this product at our conferences. I spent a lot of time speaking with a rep from the company and found out that PharmaNac can also help with respiratory issues. My mom has sarcoid and when it flares up she has extremely labored breathing. She started taking PharmaNac, too, and since then, her flare-ups have been much more manageable! She has also been able to discontinue use of her nebulizer and rarely needs to use her inhaler anymore.

I have talked to many people that have tried this product and some have experienced life-changing results. I have spoken to parents whose children have completely stopped skin picking because of this product and I have spoken to parents whose children’s skin picking or hair pulling has diminished significantly. I have also spoken to parents who have not experienced any positive results. Although this product is not for everyone, I am glad it is available for those that it does help.

In an act of solidarity, I have been taking PharmaNac as well. Ellie and I drink our fizzy water together every evening. We have tablet races to see whose can float to the top first. We clink our glasses and have fizzy water drinking races. Ellie loves to drink hers from a coffee mug and pretend she is daddy drinking coffee. Since I have been drinking my fizzy water, I have eliminated my--how should I put this--phlegm problem in the mornings. Ellie and I have not experienced any stomach issues from this product or any ill effects from discontinuing use for a week (except that my phlegm came back). 
With all of this said, I am obviously not a doctor and do not intend to give any medical advice. I just wanted to share my anecdotal evidence and let you know about this possible treatment.

I am excited to be able to offer PharmaNac along with a variety of other products at www.teamhopefull.com, and 25% of all sales of PharmaNac will be donated to Team HopeFull: Fighting Prader-Willi Syndrome Together.

I hope you check out the Stress-Free Kids books and CDs, Toddler Health drink supplements, Bellie Bibs, Fun and Function weighted products, kids yoga DVDs, and of course. PharmaNac at the Team HopeFull store. The best part is that a percentage of every sale goes back to the PWS community!

PharmaNAC contains 900mg  of pharmaceutical grade N-acetylcysteine per effervescent tablet. It is utilized by the body to increase glutathione levels.  Glutathione, being one of the body’s most ubiquitous and powerful antioxidants and detoxifiers, is able to help strengthen your immune system and reduce inflammation that may be found in the respiratory tract. Also, normalizing cysteine-glutamate levels in the brain may help people with autism, bipolar disorder, and compulsive behaviors.

4 comments:

Vada said...

This is cool!

Full Lace Front Wigs said...

This is an awesome post!
Thank you so much for sharing.

Karen said...

Hi, my daughter is a big skin-picker (similar behavior to hair-pulling), and she has responded to 2,400 mg of NAC in the past (tablet form), but it only lasted for a month. I'm trying the PharmaNAC now, but I wanted to know since it's more "potent", how much worked for your daughter. Please let me know.

Unknown said...

I was interested in trying pharmanac wondered how we know what dosage amt to give?