It has been six months since my daughter, Kathi was featured on Global Genes. I wish I could say that we are closer to an effective treatment for her, but the truth is that we are back at square one and her medical team suspects chronic migraines yet again.
We had a glimmer of hope through a new neurosurgeon and his physician’s assistant, both of whom looked at Kathi’s CT scans and said they saw what looks like a cyst blocking the fourth ventricle in her brain. They told us that this fourth ventricle’s job is to drain CSF and that the cyst appeared to be blocking about two-thirds of it. They told us that there is no way to remove the cyst, but that a VP shunt would help solve the drainage problem and hopefully relieve Kathi’s head pain. We were overjoyed at the prospect of a step in the right direction and asked them to please be sure to put that in the report so that Kathi’s neurologist could follow up on it.
Unfortunately, Kathi’s neurologist received the report but found no mention of a possible cyst anywhere in it. We were devastated. In its place was a note saying that they were trying to determine whether Kathi has Chiari Malformation I or Pseudotumor Cerebri (or both, or neither). There was a recommendation to have her undergo more tests and scans, which we are doing step by step. Her neurologist’s choice of action in the meantime has been to prescribe migraine medicines and treat Kathi’s head pain as chronic migraines.
But Kathi has not given up hope! In fact, every setback makes her more determined to make IH known so that more medical professionals will receive information about it and other IH patients will not have to endure the back-and-forth diagnosis yo-yo that she so often experiences. She has spent the last six months getting her foundation– The IHope Foundation– off the ground, applying for nonprofit status and promoting HOPE via her Facebook page, word of mouth and her website.
Please visit Kathi’s foundation Facebook page to see what our team of wonderful admins have been sharing, all in the name of promoting education, understanding, encouragement and HOPE for a cure. We have partnered with an artisan from TG Bears in creating a special IH awareness bear– the Kathi Bear– that can be ordered and shipped to IH sufferers and supporters all over the world. We have also partnered with an artisan from Jewels for Hope in creating beautiful, stylish bracelets to help promote IH awareness– one bracelet features Swarovski crystals!
Our most exciting project at this time is promoting an IH awareness day on June 25th. It is called IHope Day– a day for hope for all those affected by Intracranial Hypertension. Kathi founded this day, at the suggestion of Monica from TG Bears, through her foundation and has been promoting it with her admin team and foundation board since May 10th. We are pleased that in less than a month, we have over 700 committed participants worldwide; and it’s still growing.
We have requested our local government’s support to have this day recognized as an official IH awareness day and are awaiting their reply. Kathi’s goal is to have IHope Day become an international IH awareness day since there is no single day for that yet. Please join us in the fight to raise awareness of IH in all communities throughout the world. For more information on this day and how you can help, please visit www.facebook.com/ihopeday or email us at [email protected].
In service dog news, Kathi’s dog, Lily, is now in Phase II of her training through Little Angels Service Dogs. Kathi was measured for the mobility harness that Lily will wear just last week. Please visit Kathi’s service dog page at www.facebook.com/kathisservicedog to see photos of Kathi’s visits with Lily and to follow their journey. We hope to bring Lily home soon!
So despite a setback in Kathi’s treatment, we are still filled with hope and moving forward to help others with IH. We thank the wonderful people at Global Genes for their support and encouragement, without which Kathi wouldn’t have had the inspiration or the resources to begin her foundation. We look forward to growing and serving the greater rare disease community for many years!