NATIONAL UTERINE FIBROIDS FOUNDATION

Rating: 5 stars   8 reviews

Issues: Health, Cancer

Location: PO Box 9688 Colorado Springs CO 80932 USA

Mission: The National Uterine Fibroids Foundation (NUFF), founded in 2000, began as a grassroots organization in 1998 and grew out of the need for women to gain access to objective, scientifically and medically based, information about treatment options for uterine fibroids BEYOND the hysterectomy. As an organization, NUFF has five mission goals: 1. To provide information to the public about the diagnosis of, and treatment options for, uterine fibroids and related conditions of the reproductive systems, and the right to receive informed consent from medical providers; 2. To advocate for the rights of all women to maintain independent choice in the matter of deciding upon treatment options; 3. To facilitate research studies conducted on the cause of, treatment options for, and patient outcomes associated with treatment of uterine fibroids and related medical conditions; 4. To promote alternative to hysterectomy in an effort to reduce the number of unnecessary hysterectomies performed on women each year in the United States; 5. To provide support to internet developed women''s health groups that provide services to women recovering from treatment choices that resulted in a negative outcome and/or reduced Quality of Life related to uterine fibroids and/or other conditions of their reproductive systems.
Programs: NUFF's programs include a toll free helpline, educational brochures, an online support group, and the continuing development of a website portal for information dissemination. In addition, we host public lectures on uterine fibroids and treatment options. NUFF also assists women and physicians in developing an internet presence that is medically related to uterine fibroids through website development or support group maintenance.

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Community Reviews

Rating: 5 stars  

10 people found this review helpful

The National Uterine Fibroids Foundation (NUFF) has been a godsend to me, as a patient with severe uterine fibroids. Uterine fibroids are a disease which no one talks about, yet many women suffer from. It is most common in women of color and other minorities. Because it's a disease of the female reproductive system, it's difficult for people to talk about openly. Furthermore, most doctors aren't trained to treat fibroids. Uterine fibroids, while common, become a serious disease in some women. They can cause anemia, kidney failure, infertility, bladder obstruction, and severe pain. I am so fortunate that my husband discovered NUFF. My doctors weren't able to treat my fibroids effectively, and didn't know where to refer me. I was only 39 and had half my life ahead of me! My husband resorted to searching the internet, and found NUFF's online community. I honestly don't know what would have happened to me, had I not found the NUFF community. NUFF has empowered me, and countless other women, to educate myself, take control of my condition, and make an informed decision of treatment options. NUFF has empowered me to take my life back from this disease! I only wish NUFF -- and its founder Carla Dionne -- had a higher profile, so that more women could benefit from the unique service and community it provides. Please list NUFF in your "Great Nonprofits Top-Rated Women's Empowerment Nonprofits."

I've personally experienced the results of this organization in...

Taking back my life, participating actively in my own medical care. And now, helping empower other women with the same disease!

If I had to make changes to this organization, I would...

Increase NUFF's public profile, and somehow make more women aware of it!

What I've enjoyed the most about my experience with this nonprofit is...

Empowering me to take back my life, and participating in an informed way in my own medical care. Not to mention helping other women do the same!

The kinds of staff and volunteers that I met were...

Involved, committed, determined, compassionate.

If this organization had 10 million bucks, it could...

Empower women to participate in an active and informed way in their medical treatment. Educate medical professionals and improve medical care. Save women's lives. Save medical costs.

Ways to make it better...

I had known about NUFF earlier!

In my opinion, the biggest challenges facing this organization are...

Being able to reach as many women as possible, instead of just counting on women to accidentally find it online.

One thing I'd also say is that...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-5-01

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Rating: 5 stars  

8 people found this review helpful

This foundation has a website and sponsors a yahoo group for women seeking inforation on uterine fibroids. Many women, including myself, have been told by multiple doctors (usually their gynecologists) that their only options are hysterectomy or hormone shots. Both of these options can have significant negative repecussions over the course of a woman's lifetime. NUFF lets women know that less invasive treatment options exist. This information empowered and encourages women to keep looking for the option that is most appropriate for them. Without it, women are at risk for becoming yet another unecessary hysterectomy statistic.

I've personally experienced the results of this organization in...

I am grateful that, with the information from this organization, I was able to avoid major, life-altering surgery. Instead, I had a simple, minimally invasive procedure that resolved my fibroid problems.

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2010-1-01

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Rating: 5 stars  

8 people found this review helpful

NUFF and the online support group founded by Carla Dionne inspired me to set up a similar group for German speaking women. I am British but live in Germany and suffered from debilitating symptoms caused by Uterine Fibroids for 16 years. NUFF and Carla have taught me so much about using online resources to do research and also about campaigning - and I have used these skills to help thousands of German speaking women in Germany, Austria and Switzerland.

I've personally experienced the results of this organization in...

So many ways. It gives women their lives back. Not only English speaking women, but through groups inspired by NUFF, women in other parts of the world.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-5-01

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Rating: 5 stars  

10 people found this review helpful

I can't say enough about NUFF. The organization epitomizes empowerment for women. As others have already stated, there is no reason to give up your uterus because of a benign condition (fibroids) that can be treated with many options less radical and harmful than a hysterectomy. NUFF gets the word out and connects women to share their experiences and knowledge and give each other support through their quest for appropriate treatment. The yahoo group hosted by NUFF provides a moderated forum where only first hand information is shared and support is offered every step of one's way.

I've personally experienced the results of this organization in...

A year and a half ago I came home from the hospital after a myomectomy that removed nearly 3 lbs. of myomas, on my 52nd birthday and have felt half my age ever since in every sense. Talk about empowerment..........

If I had to make changes to this organization, I would...

Wish it could reach more doctors directly to stop them from pushing hysterectomy as "the one sure cure" for fibroids.

What I've enjoyed the most about my experience with this nonprofit is...

Carla Dionne's tireless passion and fair moderation of the yahoo group and the heartfelt sharing between women that is fostered.

The kinds of staff and volunteers that I met were...

Willing to share all!

If this organization had 10 million bucks, it could...

stop senseless hysterectomies.

Ways to make it better...

I had known about it sooner.

In my opinion, the biggest challenges facing this organization are...

Western medicine's hard to change traditions and, in some cases, greed.

One thing I'd also say is that...

This group TRULY empowers women.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-5-01

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Rating: 5 stars  

10 people found this review helpful

In 2008 I was diagnosed with numerous uterine fibroids and an enlarged uterus. I was having serious symptoms which had crept up on me (the infamous "symptom creep"). My doctor offered me only a hysterectomy or injections of a drug (Lupron) with many known (negative) side effects. Through the information and on-line dialogue (Yahoo list serve) which this organization provides, I learned about several other options and eventually chose one (embolization) which was more appropriate for me. I continue to follow the dialogue to keep up with information on fibroids and their treatment.

I've personally experienced the results of this organization in...

my struggle to find alternatives to hysterectomy as a treatment for uterine fibroids.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-5-01

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Role: General Member of the Public
Rating: 5 stars  

8 people found this review helpful

This group helped me to avoid an unnecessary hysterectomy. I learned that I had more options than those presented to me by my doctor. I became informed, empowered, and confident in the choice that I ultimately made to remove my fibroids that were making me miserable. Thanks to the group, I have my uterus, and my symptoms have greatly improved.

I've personally experienced the results of this organization in...

getting information to the group quickly.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-5-01

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Rating: 5 stars  

10 people found this review helpful

Several months ago, after feeling lousy for quite some time and after a variety of doctor’s appointments to try to figure out what was causing my problems, I was diagnosed with uterine fibroids (benign tumors of the uterus). I’d never heard of fibroids before (even though I now know that many women have them!) and was shocked when my obgyn recommended hysterectomy as my treatment option. At 48 and not yet experiencing menopausal symptoms the thought of a hysterectomy that might hasten my passage into menopause was not at all appealing. I was also shocked by the attitudes of some with whom I spoke both inside and outside the medical community who very cavalierly said at 48 you don’t need your uterus anymore so just have a hysterectomy. This thinking was so counter-intuitive and upsetting to me. As someone who believes that all our organs are intertwined and dependant on one another and serve a multitude of purposes for overall wellbeing, I felt surely there was a better way to deal with my fibroid problem. I am grateful to be living in the age of the Internet and will be forever thankful to Carla Dionne for sharing her own journey through the fibroid maze (see http://www.uterinefibroids.com/) and for establishing the National Uterine Fibroid Foundation (NUFF.) Through NUFF I was quickly directed to very informative web sites on fibroids and fibroid experts that gave me hope that I had other options other than hysterectomy. More importantly, I joined the NUFF sponsored free online Yahoo Fibroid Support Group http://groups.yahoo.com/group/uterinefibroids that has proved to be an invaluable resource for me on so many fronts – from tips on how to deal with various fibroids symptoms, to insights on pros and cons of various treatment options as well as recommendations on fibroid experts to see. For any woman anywhere in the world confronting fibroids and how to treat them, joining this support group will be the best thing you can do to help yourself get the help, support and medical direction you need. Thanks to NUFF and the online support group, I’m happy to report that I recently underwent laparoscopic and hysteroscopic surgical removal of my fibroids under the care of an excellent fibroid specialist and am feeling better than I can ever remember!

I've personally experienced the results of this organization in...

I was able to easily access very useful resources to learn I could treat my fibroid problems without having to have a hysterectomy. Additionally, I received invaluable support in a multitude of ways from other women on the online fibroid support group.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-5-01

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Rating: 5 stars  

10 people found this review helpful

I was shocked when my doctor suggested a hysterectomy. I was just diagnosed with uterine fibroids and came to him about the symptoms they were causing. I didn't even know what fibroids were! This was early 2000 and I was 42 years old with one daughter. I started my research about uterine fibroids and found Carla Dionne's book, "Sex, Lies, and the Truth about Uterine Fibroids, her group uterinefibroids@yahoo.com and the awesome organization NUFF. I read Carla's struggle with the medical communities ignorance about the inclusive role of a women's uterus beyond child bearing and the roles hormones play in our stability as humans. On the yahoo groups page I read daily of hundreds of womens struggles from around the world on how they were introduced to this condition and ultimately their medical professionals always choose hysterectomy first. Not because it was the best for the woman but because it was the easiest for them to perform. I learned that fibroids are begnin and I could wait to see if I could live with them. Eight years later I realized I had enough of the creeping symptoms; bulk in my abdomen, trouble breathing, GERT, incontinence and tired of being asked when the baby was due. I had stayed on Carla's uterinefibroid site and followed NUFF for those 8 years and was fully informed and capable by now to chose the doctor and the procedure of my choice that was best for me. Without NUFF and uterinefibroids@yahoo.com I would have been wandering in the wilderness. I chose, at 50 yrs, to have a myomectomy and preserve my uterus. It has been 2 years now and I am living life again! I am fibroid free and feel like a young vivacious woman again in all aspects. If it wasn't for NUFF and Carla's passion for the truth thousands, no-millions of women would be lost, scared, and succumbed to the unneccesary hysterectomy and the whole other host of troubles that come with that. Thank you NUFF for saving my quality of life. Thank you Carla Dionne for your tireless passion.

I've personally experienced the results of this organization in...

providing me with the resources that I could not find from my medical community.

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010-1-01

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