It has been said – quite possibly to you as a patient – that not enough is known about these less invasive treatment options to assure safety and efficacy, especially in the case of Focused Ultrasound.  I would argue strongly against this based on the anecdotal evidence that exists with over 6,000 patients treated worldwide, but anecdotal evidence is insufficient and that’s why clinical trials exist.  These trials need patients to participate, so now my request to you is to get involved in changing the paradigm by participating in a Clinical Trial.

If one particular trial isn’t right for you, maybe a friend can benefit from the cost of their procedure being covered, maybe someone you didn’t even know was struggling with this decision, but learns of this from you and your message changes their course – so if you cannot participate, spread the word.

Here’s a Clinical Trial that resonates with Fibroid Relief on many levels – The FIRSTT research study: Fibroid Interventions: Reducing Symptoms Today and Tomorrow

Trial Eligibility:

You may be eligible to join this study if:

• You are at least 30 years old
• You are not actively trying to get pregnant
• You have not had major surgery to treat your uterine fibroids

Other Important Details:

• Everyone in this study will receive one of the minimally invasive treatment options.
• You will have an equal chance of having either procedure.
• They will follow you for at least 6 months after the procedure.
• You will be compensated for your time.

So, I’ve taken to funneling these rants into reading and learning more about the reform initiatives but more importantly, how I can be one of the many that together can affect change in this system for women.  The National Women’s Law Center has some fantastic facts and information, as well as ways to get involved by Contacting your Congress-person.

I was particularly interested in their Why Women Need Health Reform Fact Sheet that emphasizes that “Women Struggle to Find Coverage for the Benefits They Need”….most of you out there know exactly how true this concept is….sigh….

I think we may have found ourselves a great group to partner with on this….more to come…

Joy

http://www.awomanisnotapreexistingcondition.com/

It’s strange how much this reminds me of the way a diagnosis of Fibroids swoops into a woman’s life and disrupts….well, everything!

Dealing with Fibroids in general has so many analogies to a snow-storm it’s uncanny…the lack of access to normal things in life,no clear path, canceled workdays, rescheduling, rescheduling again, and again, and AGAIN!!

Fibroid Relief would like to serve a role similar to your favorite pair of snow boots (for me that’s my knee-high wellies) in that we help you navigate this treacherous path with the awareness that it might get – heck, might already be – yucky and difficult to traverse.  You’re going to have to negotiate your way around or through puddles and may have to shovel out a new path to find your way to the treatment option that’s right for you.  And the storm may come again in different forms like finding the right doctor to dealing with insurance companies.  It may get stormy as you navigate your way through life around the time when you do finally find the right option for you. 

But just like those wellies by the front door….we’re here when you need us and can help negotiate the treacherous path during the storm.

The clinical applications to be explored amid the medical device-focused CER studies range from cardiac imaging techniques to cancer screening modalities. Among this group, we were pleased to see research that compares uterine artery embolization (UAE) vs. magnetic resonance guided focused ultrasound for the treatment of uterine fibroids. This randomized clinical trial is being performed at the Mayo Clinic by long-time fibroid researcher and Fibroid Relief Advisory Board Member, Dr. Elizabeth Stewart. The results of this study should address some of the questions needed to better clarify where focused ultrasound compares in the spectrum of treatments for fibroids, yet is really the tip of the iceberg of the research needed in this disease.

Historically, funding dollars for fibroid research have been extremely limited. Little research exists that looks comprehensively at the comparative effectiveness of even the most utilized surgical treatment options, let alone the comparison of those options to minimally or non-invasive alternatives desired by much of the patient population.

We are hopeful that the Mayo study will have opportunities for continued funding beyond its $500,000. Additional funding could allow for greater representation of patient population (more sites involved in the trial and more patients assessed) and longer duration of follow-up (this study must be complete in a short 2-years, which doesn’t allow for sufficient follow-up to assess long-term outcomes).

We look forward to seeing additional research awards in this space – as the need is huge! For more on uterine fibroids and the impact of the disease, please check out our website at Fibroid Relief.

In RF ablation, three small incisions are created in the abdomen to insert a laparoscope (to guide the procedure) an ultrasound probe (to visualize the fibroid) and the RF probe which is inserted directly into the fibroid to heat and ablate it.

Halt Medical is enrolling patients in a clinical trial to assess this treatment option for fibroids at six medical centers in the U.S., two in Mexico and one in Guatemala.  For more information, check out the WSJ article.

For accurate information about Focused Ultrasound – check out About Focused Ultrasound on Fibroid Relief.

Tis the season for New Year’s Resolutions…and as usual, I’m thinking wellness. But for once it’s not so much about LOSS or MORE (weight-loss & exercise more), but being WELL. To me this means being mindful of what I eat, thoughtful in how I care for myself, and prioritizing my health so 2010 is a year of WELL for me.

Fibroid causes are unknown and although research does not – yet – link their growth to your diet, exercise, or how much you sleep, there’s something in me that says that the more WELL we are, the better we can at least handle dis-ease in life.  Awareness about fibroids is part of the process of taking care – as is our motto, information is power and being well is caring for your Self first and foremost so that you can tackle whatever the year has ahead, with strong mind and spirit. I hope you’ll consider making 2010 the year of WELL for you too – and the year of putting your wellness first and foremost…from education to action, dialogue to support, and rest to relief.

Happy New Year to you all!

Last week I visited a new addition to our Advisory Board Member, Dr. John Lipman, in Atlanta, Georgia.  Dr. Lipman is renowned as a fibroid expert and likely one of the most, if not THE most, experienced physicians in performing uterine fibroid embolization.  For this alone, he’s a phenomenal resource to Fibroid Relief, in sharing his wisdom about the procedure, appropriate candidates, advantages and disadvantages, etc. but it is his accessibility and engagement both in patient care and global awareness about uterine fibroids that make him an invaluable resource to Fibroid Relief.  Over the past several weeks he’s helped me to learn a great deal about UFE and shared with me his experiences in treating many, many, many fibroid sufferers over the years.  He also let me stand in during a procedure – which I’ll talk more about in NEXT Tuesdays’ Blog…

In the interim, be well -

Joy

Eligibility

• How will I feel?
• How will they react?
• Am I “over-sharing?”
• Is this “too much information?”
• Will I be embarrassed?

So many reasons for each and every one of us to over-analyze any personal or medical or relational tidbit we may be inclined to share with another…

Some thoughts on this:

• For starters, the more honest, fearless, and candid we are with our own stories, our own presentation of our self to others, the more true we are to our own lives and the richer the response we are likely to find in return.
• In addition, by living that way and sharing things authentically, our actions are in fact giving someone else permission and comfort to do the same thing in their own life, with their own story.
• And lastly, recent statistics about social media (blogging, tweeting, Facebooking, whatever) show that at least 1 in 3 patients learn about their medical condition, care and their options from reading another patients story or comments.

So….by taking that fearless risk of being embarrassed or reacted to in a way that doesn’t feel 100% positive we’re not only growing, we’re helping others grow and teaching others about how to avoid some of the difficulties we encountered in the past in our lives – medical or otherwise.

Start talkin’ it up ladies and gents

Joy

There’s a little bit of those nerves of excitement and anticipation one feels before a first date – hoping they show, hoping I am my very best me, and that everyone has a great experience and wants to do it again.

Then there are the feelings that are more parental in nature, maybe proud is the right word…Fibroid Relief has grown from merely a vision a year ago into an organization with hundreds of members all over the world.  It seems like the Chicago Event is the beginning of our coming out party as we share our message to increase awareness and access for Fibroid Sufferers throughout the world.

I also feel an immense amount of gratitude to all that have been involved to date for stories shared, efforts made, support given, and the rich feeling of warmth that can only come from knowing that the energy given out was both needed and well-received.

And lastly, there’s the sense of hope - that this is simply the beginning.  I believe so strongly in the power of education, awareness and access to wellness for all, and hope with every fiber of my being that our mission at Fibroid Relief has the power to be the beginning of something truly beautiful – change.  Change for all women – for mothers, sisters, daughters, their families, and maybe even eventually change in healthcare.

Please share information about the Event with anyone you know in the Chicago area – spread the word, and help us continue to do the same.

~joy