Over the last year, I’ve watched a community, united in their struggle against a rare disease, fight for understanding. I’ve seen the pain, devastation, and confusion first hand.

I’ve seen people hanging on by a thread.

Meniere’s disease is a big problem, and for those of us who suffer, there are no simple solutions or easy answers. We face a serious lack of scientific understanding coupled with an even greater lack of public awareness.

But there is also hope. As challenging as it is, many of us learn to manage our symptoms, or at the very least, learn to live in harmony with them.

And all the while we hope for a cure. We hope for new research and understanding. We hope for a future free of vertigo and other unwanted limitations.

I am excited to announce that there is incredible research happening right now, and you can get involved. You can be a part of the solution.

A team of researchers at a Canadian pharmaceutical company are taking a novel approach to develop new treatments for Meniere’s disease. And they have the resources, partnerships, and track record to back it up.

Allow me to introduce Xenon Pharmaceuticals and its VP of Clinical Development, Dr. Y. Paul Goldberg.

Dr Paul Goldberg

Dr. Y Paul Goldberg

It’s all about the genes:

Very little is actually understood about the underlying cause of Meniere’s disease.

There are many theories, but at the end of the day, we’re still in the dark. And as a result, most treatment options focus primarily on reducing the symptoms.

At this point, it’s unclear if Meniere’s disease is even a single condition. Some research suggests that it’s possibly a basket diagnosis with multiple underlying causes.

What’s clear, however, is that we need a better understanding, and Xenon hopes to provide one through genetic research.

Dr. Goldberg and his team believe that by finding an underlying genetic cause in certain cases of Meniere’s disease, they may be able to develop targeted new medications that could help the rest of us. And they have a good reason to believe in their approach: it’s worked for them before.

Xenon pharma CEO

Simon Pimstone, founder, president and CEO of Xenon Pharmaceuticals. Image Source

The people who feel no pain:

For most of us, pain is just an unpleasant part of life. For others, pain is chronic, and can quickly make life miserable. But for a very rare few, pain is something that simply doesn’t exist.

Can you imagine what it would be like to live without pain? On the surface, it might sound good, but the reality is quite different, because pain serves a purpose. It’s a signal that something is wrong.

Congenital Indifference to Pain (CIP) is an extremely rare genetic disorder in which a person is incapable of feeling pain. The problem is that while they don’t feel pain, they aren’t invincible. Many sufferers end up breaking bones, burning themselves, as well as a whole host of other terrible injuries without ever noticing.

Knowing this, Dr. Goldberg and the Xenon team had an idea. If they could find the underlying genetic cause of CIP, he might be able to not only help these patients, but possibly create better pain-killing drugs as well.

In todays world, where opiates are over prescribed, often abused, addictive, and potentially dangerous, we could use a better pain killer.

So they got to work, and so far, they’ve had some pretty remarkable results. By studying the genome of CIP patients, and their families, they discovered, along with other groups, that that CIP is caused by a mutation of the SCN9A gene. The very gene responsible for instructing the body to make the proteins necessary to send pain signals through our nerves.

Xenon headquarters

Xenon Pharmaceuticals Inc

By targeting this gene, Xenon is creating powerful new medications to treat a wide range of conditions, including Erythromelalgia, an overactive form of the same protein. These patients are essentially the opposite of CIP patients. They suffer from an extreme sensitivity to pain.

The bottom line is that their methodology is getting results. And lucky for us, Xenon has now set its sights on Meniere’s disease.

A genetic approach to Meniere’s disease research:

Xenon believes that there are undiscovered genes that cause Meniere’s disease which, if found, could lead to better diagnostic tools, new targeted medications, and possibly even treatments for other vestibular disorders.

But the first step is to gather patient information.

Xenon needs to learn as much as possible about our symptoms and experiences. And to this end, they have created a survey to help identify the patients and families that might be critical to their research.

We can help them make a difference.

Xenon is looking for individuals who meet the following criteria:

  1. They have been diagnosed with definite Meniere’s disease by a neurotologist or otolaryngologist (Ear, Nose and Throat doctor) AND either
  2. They had an early age of symptom onset, <35 years of age, OR
  3. They have living relatives with Meniere’s disease

For the first time, in a long time, we have the opportunity to support Meniere’s disease research in a real and tangible way. We can help them find better treatments.

If you fit the criteria, please take a few minutes to fill out their patient survey by clicking the button below. They need as many people as they can get. For the larger the sample size, the better the results. Once surveyed, some patients will be invited to send in saliva samples for genetic analysis.

But sometimes it’s just one person that makes the difference. Sometimes one individual can bring it all together, and provide the genetic information necessary for a breakthrough.

You could be that person, but they’ll never know if we don’t help.

Together we can support this incredible research effort that may one day lead to the better treatments, or possibly even the cure we all hope for.

Together we can make a difference.

Additional Information:

Feel free to contact Emma Leach at Xenon Pharmaceuticals with any questions or for more information concerning the Meniere’s disease research survey at: Research@xenon-pharma.com

Xenon Pharmaceuticals Website

Rare disease makes girl unable to feel pain – An NBC news article about a young girl with Congenital indifference to pain.

    • Hi Nancy, its cases of early onset and cases where it runs in families. Their hypothesis is that by studying the more extreme outlier cases, they have a stronger likelihood of finding an underlying genetic cause. And if they can find a gene to target, the drugs they develop will potentially help us all.

  1. It’s runs in my family but sadly it was my grandmothers brother who suffered with it and he is no longer with us. I did not know this until I was diagnosed and his daughter told me. I wish someone would do something because even without the vertigo, this week has been hell. I don’t even know how to describe it to my Dr because all he is worried about is the vertigo. What about living? By the way, Glenn I’m sitting here with the headphones on listening to your Symptom Relief Project. It’s the only way I geT relief.

    • Hi Sheryl, I’m so sorry you are having such a hard week, but I’m so glad to hear that the Symptom Relief Project is helping. Even if you think he wont listen, I would try to explain to your doctor what you’re going through. And never forget, you can always find another doctor.

  2. Interesting… In my family, on my dad’s side, all the men get prematurely gray (starts in their 20’s), develop hearing loss of some kind by age 40 (or earlier in my case), and develop respiratory problems (like COPD). Every one of my uncles on that side of the family exhibit this. I am fortunate (so far) to have missed the respiratory part, but I do have asthma that flares from time to time. I had never considered that my Meniere’s might be hereditary until recently.

    • Hi Jim, it certainly is possible that it’s hereditary, though not all cases are. Research has shown that only 8-10% of cases of Meniere’s disease run in families. Though when I spoke to Dr. Goldberg, he explained that while its only a small subset, the results of studying these cases can potentially produce treatments for the rest of us.

      • I agree that it is critical to know the cause of the Meniere’s disease. To do this, we should be able to diagnose the condition as Meniere’s then find its cause.

        I’m a professor of Audiology at Missouri State University and does research that has the potential for objective diagnosis of Meniere’s disease. To participate in the research study, you should have no more than moderate hearing loss, no middle ear problem, a clinical diagnosis of Meniere’s disease in its early stage. The research study is conducted at my laboratory at Missouri State University, Springfield, MO. If you are interested to participate in this study, you could contact my research assistant, Alana Kennedy, at 417-860-2556 or contact me (Dr. Kaf at 417-836-4456 or via email wafaakaf@missouristate.edu).

        This research is funded by the Hearing Health Foundation and part of the funding is to reimburse participants for their time to participate in this study ($75 per participant). http://news.missouristate.edu/2016/01/07/menieres-disease/

  3. When I was diagnosed at 47 and my family, (dads side) found out my symptoms,my cousin called and said that’s exactly what my uncle had although no one could diagnose him at the time. I would guess he was in his late 50’s ya the time.Talking to her further she remembered my grandmother (still my dads side) was always dizzy when she layer down. Genetic? Even at an older age?

  4. I’ve been wondering about a link between Meniere’s and Parkinson’s. I was diagnosed with Meniere’s in 2005. I was 32 at the time. My grandfather had bouts of Meniere’s in later life, he also suffered from Parkinson’s along with a host of other problems. Now my dad has been diagnosed with Parkinson’s. It got me thinking about possible hereditary connections.

    • Hi Peter, I’m not familiar with any link between Parkinson’s and Meniere’s disease. Maybe it’s possible, I’ve just never heard of it.

      • That’s interesting as I know 2 people who both had Menier’s who went on to develop Parkinson’s. Maybe co-incidence but odd nevertheless

  5. I was diagnosed with Meniere’s Disease when I was 48. I manage it with a diuretic and Meclizine. I was doing ok until I was diagnosed last June with diabetes and the doctor gave me Metformin. I began having constant noise in my ear and had 2 acute Vertigo attacks a week apart and a 3rd a few weeks later. My ear constantly feels full and noisy and I am in constant fear of another attack. I found out that all the diabetes drugs are ototoxic and I can’t take them. I have young kids and it is a struggle every morning. I have to move slowly until my head clears. I notice my eyes are very effected at times if I look at certain things. I hope you guys can find things out and come up with better treatments or even a cure. Thanks for getting the word out….most people don’t even know what Meniere’s is. Thanks… Marcella

  6. Marcella, Glenn’s posts always have good ideas! I had really good results from acupuncture treatments, especially helped my tinnitus & ultra-sensitive ear. There are probably ways it would help your diabetes also. I hope you get some relief!

  7. I was diagnosed at 14, symptoms started at 12 years old. I have had multiple physicians tell me I am the worst case they have seen. It took a long time to get a diagnosis back then because I was so young. I tend to fall in these small percentage polls across the board – lol. Im gonna play the lottery one day! It hit me really hard 2009-2011 and I even lost a pregnancy because my attacks were so severe. It was in my left ear and was treated with injections to “disable” by balance system on the left – but symptoms have returned only I think it is now in my right ear. Trying not to panic over it. I hope I can offer something for this research study or learn something new that I havent tried yet.

  8. I was just diagnosed with Meniere’s disease I’m 56 and my uncle has had it now for 15 years. Is this study still going on?

    • I’m not entirely sure Juan. I published that article a while back, and last I heard, they were still pushing forward with their research.

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