Tag Archives: awareness

Rare Disease Day

Rare Disease Day

Today, February 28th, is Rare Disease Day. It’s the day to recognize and increase the general public’s awareness for these diseases. Honestly, in the past, I would have given very little thought of this day. Of course, I would have felt awful for the people with these diseases and offered up a prayer for them. And then, I would have moved on with life.

Well, ironically, I have been recently diagnosed with one of those “rare” diseases. This past fall I was admitted into the hospital for stroke-like symptoms. The doctors diagnosed me with a complex migraine causing one-sided numbness and weakness. And that was that. It was about a month before I regained full feeling and could walk normally. Crazy, right?! I spent months (with very little improvement I might add) trying different medications, physical therapy, and seeking opinions from different doctors. This past week I met with a headache specialist, who confidently stated I met all the criteria for Hemiplegic Migraine. It is a rare and severe form of migraine disease. Side effects can include severe headache, one-sided numbness, one-sided weakness or paralysis, balance issues, visual aura, dizziness, nausea/vomiting, sensitivity to light & sound, slurred or stuttered speech, confusion, decreased consciousness, or even coma. It does act similarly to a stroke, but the symptoms are temporary and CT & MRI images are normal. However, HM has been confused with stroke and MS quite often. There are two types of HM: Familial and Sporadic. A person with familial HM meets all the criteria for HM and has a family member who also has been specifically diagnosed with HM. An interesting tidbit: Through research, doctors have discovered gene mutations linked to HM. The subtype of FHM depends on the type of gene mutation. Anyways, a person has sporadic HM when he/she meets all the criteria but does not have a family member with HM. There is no cure for HM. It is treated with both preventive medication (i.e. anti-convulsants, anti-depressants, etc.) and abortive medication (NSAIDs, narcotics, etc.) Please note: Due to contraindications, the migraine medication triptans should be avoided when treating HM. As with any other form of chronic pain, medication and procedures will only accomplish so much. One must learn to manage the pain through lifestyle changes, diet, exercise, yoga/meditation, pain psychology, etc. While these changes won’t take away the pain, they will most likely decrease the pain and the anxiety/stress levels. Life will become brighter as time goes on.

Thank you for taking the time to read this and for spreading the awareness of rare diseases!

Awareness for Hemiplegic Migraines

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Spotlight: RSDSA

Today I would like to introduce you to (or maybe you are already familiar with) RSDSA. This website has been a great reference point for me over the past couple years. RSDSA was founded in 1984, and it’s mission is to

“provide support, education, and hope to everyone affected by CRPS/RSD while we drive research to develop better treatment and a cure.”

This website has a wealth of articles on the condition, ongoing research studies, available treatments, stories from people affected with RSD/CRPS, info on support groups, and much much more. For a reasonable fee of $20 ($25 for international dues), you gain a 1-year membership of RSDSA. You will receive quarterly news letters, info on you can to get connected with others affected with CRPS/RSD, stay up-to-date with CRPS/RSD related literature and events. I highly recommend that you take browse through this website and hope you find it find it helpful as you or a loved one navigates through life with CRPS/RSD.