SHARE YOUR STORY

We are deeply motivated and affected by the stories shared by real patients and families.

We welcome you to ask questions, share your thoughts, or introduce us to the individuals we are working to help.

    • I am writing to you on behalf of myself and other sufferers of Peyronies disease. Peyronies is a fibrotic condition where scarring occurs in the penis. While it is not a life-threatening condition, it is emotionally and mentally devastating. There is no research being done for finding a solution to help men with Peyronies. We believe that Peyronies sufferers could greatly benefit from tissue engineering and regenerative medicine.

      Response from: Professor Tatiana Segura

      [from Lindsay Riley, PhD] Peyronies disease is indeed devastating, and this is a very meaningful avenue to pursue regarding biomaterials to minimize scarring. To date, the lab has not investigated prior art in the space of Peyronies treatment; however, when we have the time, we will look into whether models exist for recreating and studying the disease. Hydrogel biomaterials may be the key to lessen scarring for those who suffer from Peyronies. Thank you for bringing the importance of Peyronies research to our attention. We hope others in the field are inspired by your message.
    • I am 1 of many that suffer from scars. I have surgical scars on my face and arms. I believe this tech could change the world. Being able to go to your local surgeon and have them perform scar revision surgery with this tech would be a game changer. Please don't give up, so many are counting on all of you that are involved!

      Response from: Professor Tatiana Segura

      Scott, your words of encouragement made our day. There are multiple students in my lab who are dedicated to developing translational technology for minimizing scarring, and it makes a difference for young scientists to hear first-hand that their work is valued and impactful. We wish you the best, and I hope to have exciting updates to share in the future.
    • I have brain damage due to kernicterus (bilirubin encephalopathy), which has primarily injured the auditory parts in my brainstem,

      If I understand correctly, your research here seems to focus mainly on stroke for brain regeneration. I was wondering how the materials/techniques here would perform for the repair of much smaller brain injuries/lesions? [In my case, "the brainstem nuclei affected are the auditory (cochlear, superior olivary, trapezoid body, lateral lemniscus, inferior colliculi), oculomotor, and vestibular."]

      Thanks very much for your time, and the work you do!

      Response from: Professor Tatiana Segura

      Dear Harsh, I'm very saddened to hear that you suffered brain damage as a result of kernicterus. As a lab, we have never studied kernicterus, so we appreciate that you shared your story. Our biomaterial experiments are currently performed in mice using an induced-stroke model, so unfortunately, I have no information on how the material would fare in a different disease model. While we are currently focusing our efforts on studying stroke in the brain, we are always open to expanding our studies. This usually occurs through collaborations or if a new student joins the lab with an interest in a different disease state. Per our email exchange, we hope to hear from you regarding your interest in a masters!
    • Hi, Is there any vision for folks in a chronic stroke state via MAP?

      Response from: Professor Tatiana Segura

      Hello Chris, thank you for your question. We are slowly getting to chronic stroke. As you know, chronic stroke is is harder to treat than acute stroke because the post-stroke reparative window is closed. So far, all of our testing has been in the sub-acute time period; however, we do believe we can engineer our MAP material to re-open this window.
    • Are you planning on doing clinical trials regarding the gel for brain replasticity? And if so, when? Also, where can one find articles about the research. Thank you. My daughter suffered from StrepB meningitis as a baby and suffered 2 strokes. She has had some replasticity and I’m grateful — we are Stemcell pioneers, which has been beneficial. And I’m always looking for newer and successful ways to further bring more cognitive and functional recovery into my daughter's life.

      Response from: Professor Tatiana Segura

      Lisa, thank you for sharing your daughter’s story. It’s incredible to hear about her neuroplasticity. We are not at the stage of clinical trials, so unfortunately, we don’t have an expected date. However, hearing about stroke in such a young patient who has shown signs of replasticity is immensely motivating to my lab and the scientific community. If you go onto the Publications page of our website and filter by ‘Topic > Stroke,’ you will be able to see our relevant publications. If you include ‘Type > Primary research’ in your filter, you will see our novel work in the field. Please don’t hesitate to reach out through our Contact Page if you have additional questions.
    • My wife recently had a pontine ischemic stroke because of a blood clot in the basilar artery. She now has "locked-in" syndrome because of the area of the stroke on the pons. Now that this has happened we are seeing the scans where she has TIA's in the past we didn't know about. This most devastating stroke occurred 2/4 and was at first misdiagnosed by the attending physician at our local hospital and now is paying the price for their lack of accepting the symptoms we described to them which we now know were stroke symptoms. I would give an arm and a leg to get back my beloved Debbie in any form but this. I encourage you to step up human trials and let us know when you do as we would participate. Thanks for your time and please help us stop the suffering she is going through.

      Response from: Professor Tatiana Segura

      Alan, you have shared an absolutely devastating story that has touched the hearts of everyone in our lab. I am shaken to hear of such an extreme outcome from stroke, and you have raised awareness for how serious the condition can be. We have not yet studied stroke in the basilar artery, but thank you for bringing this important site to our attention. Clinical trials are our goal, and your story serves as sincere motivation for pushing our technology in that direction.
    • When I was a teenager I quickly developed an infectious cyst on the skin near my eye. I had to have surgery quickly before my vision was lost. Thankfully the surgery was performed in time but it has left me with a very unsightly facial scar which dramatically effects my daily life. I have practically no self esteem, depression and anxiety. Mental health treatment has not helped in the 7 years past. I need a reduction in the scarring to flourish. My most humble gratitude to Professor Segura and everybody associated for working on this. I would love to be part of trials in the future.

      Response from: Professor Tatiana Segura

      Joey, thank you for sharing your story. It is so important for my team and me to learn about all of the different people we could help. So far, we have not worked on treating pre-existing scars but rather preventing scarring during initial healing. However, your story brings attention to this important problem, and I hope it inspires a solution.
    • On September 17, 2017 at the age of 49, I suffered a spontaneous right carotid artery dissection. At the time, I was an extremely active and healthy person. Unfortunately, as we didn’t realize what was happening to me, I didn’t make it to the hospital in time to get the clot-busting shot that most likely would have prevented the left-side paralysis I suffered from my massive stroke. We learned, only after the fact that time is of the utmost importance when you first experience stroke symptoms. In fact, we didn’t know the first thing about stroke protocols. Since being in the ICU for two weeks, followed by 6 weeks of inpatient and years of outpatient therapy I am now out of the wheelchair. However I still remain paralyzed on my left side with no functional arm use and limited left leg mobility. I have spent years researching clinical trials for Stroke with no luck. I was extremely excited to read about your hydrogel therapy and still hold out hope that I will one day be able to participate in a trial that may help this therapy become a treatment for stroke survivors.

      Response from: Professor Tatiana Segura

      Rachel, thank you for sharing your story. As you read, we are working on a biomaterial-based approaches to treat the disability caused by stroke. Although we have some promising results, we have only tested them in small animal models of stroke, so it would be some time before we can test them in a clinical trial. I am very moved that you found our research and found some hope in it.
    • In 2005 Derek had a Pilonidal Cyst removed, which was much more extensive than expected. After the surgery he had a wound vac to help heal the wound, which didn’t help and he still had a pretty large open wound. About a year later he had another surgery on the wound site to try to get it to close, but that was unable to help. At one point, we found a Doctor and Hospital in Arkansas that was doing PRP wound treatments. Derek went there where they debrided the wound, applied the PRP and sealed the wound for 1 week. When the bandage was removed the wound had healed, however several months later it opened again. Unfortunately the tissue wasn’t strong enough to stay in place; and since that time Derek’s wound has been open with seepage and occasional reinfections. In the years following, we had had numerous doctors tell us that there was nothing that they could do to heal the wound. In our home treatments, we have used Silvasorb and other topical ointments to help healing, but they do nothing other than reduce the seepage for a short period of time. This obviously affects his daily life as in his activities, how he sits down, to seepage through his clothes and some pain.

      We know you have been doing a lot of research on wound therapy, is this hydrogel looking promising in the near future for Derek’s type of wound? Or any other treatments available?

      Response from: Professor Tatiana Segura

      Steve, thank you for sharing Derek's story. It is very crazy to me that we still have such a hard time closing up skin wounds. But it is true, some wounds just do not heal well or at all. For skin, our technology is much closer to the clinic. We have licensed our MAP hydrogel to Tempo Therapeutics in San Diego, and they are getting ready for FDA approval. Please keep checking our website and their website for information on a possible in-patient trial. We are continuing to improve the material as well to improve the strength of the tissue that gets deposited.