Recognizing the Symptoms of Eye Conditions...Understanding the symptoms of various eye conditions can help in early detection and treatment, preserving vision and eye health. Common symptoms such as blurred vision, eye pain, redness, floaters, and...Reactions0reactionsComments3 repliesSymptoms
Exploring Non-Drug Pain Management Options...Chronic pain, unfortunately, seems to accompany rare diseases too often. I began having chronic pain early on with my rare disease, and it is what led to my diagnosis of...Reactions0reactionsComments0 comments
Mystery...No doctor over many years can diagnosis my skin condition. Hospitals and physicians have no idea what it is. Doesn’t show in blood work. I have researched for many years...Reactions0reactionsComments4 replies
Undiagnosed with neurological symptoms and multiple misdiagnoses...Hi folks! I'm currently seeing a neurologist, who is giving me multiple tests to see what rare disease I may have. About a year ago, I started randomly slurring my...Reactions0reactionsComments4 repliesSymptomsDiagnosis
My Strategies for Living With a Rare Disease Long Term...Living with a chronic rare disease is not for the faint of heart. For most of us, there is no finishing line. Hard days can drag into bad days, which...Reactions0reactionsComments12 comments
Symptoms of Eye Vision Damage?...Eye vision damage can present with a variety of symptoms, depending on the underlying cause and severity. Common signs include blurred or distorted vision, which may make it difficult to...Reactions0reactionsComments4 repliesSymptoms
Looking for rare disease advocates for a podcast....I have a podcast called Rare Connection. I am trying to connect rare disease patients with others with the same or similar conditions with it, educate medical professionals and the...Reactions0reactionsComments1 replies
Road to NMOSD...In 2009 I began having more symptoms of blurred vision, double vision, back pain, leg pain Iretractable vomiting, nausea, hiccuping,walking became impaired. I went to ER. UTI and stomach pain...Reactions0reactionsComments2 replies
Benefits of Taking an Advocacy Break...Since becoming a rare disease mom, I have been relentlessly dedicated and solidly committed. However, more so now than ever, I have found a crucial need to pause and refresh...Reactions0reactionsComments5 comments
My First Rare Disease Conference...Recently, I had the opportunity to attend a national conference for the rare disease that is narcolepsy. This conference had a plethora of people attending, including people with narcolepsy (such...Reactions0reactionsComments2 comments
Medical Mystery - Can anybody help? ...My current symptoms: Extreme fatigue and tiredness throughout the entire day Dissociation / feeling of faintness Extreme mental fatigue and brain fog Trouble concentrating and poor memory This all started...Reactions0reactionsComments3 repliesDiagnosisSymptoms
Grappling With the Possibility of Having Another Rare Disease...My mother has the same rare diseases that I have and among her many chronic health conditions, she also has worsening vision issues. She was ultimately diagnosed with retinal dystrophy...Reactions0reactionsComments2 comments
Parenting a Child With a Rare Disease and Reflecting on the Power of Pause...The day my precious daughter was diagnosed with a rare disease is recorded in my heart, forever reminding me of a story filled with love, resilience, and the transformative power...Reactions0reactionsComments3 comments
Long time to diagnosis ...I had symptoms with Bechets when I was 10 yrs old hospitalized with terrible mouth sores and pain. From abused home. No support never Complained again . Continuing symptoms terrible...Reactions0reactionsComments2 replies
Dont know...My wife has igg4-- retroperitoneal fibrosis -- autoimmune disease. She has a lot of things wrong with her. She takes over 40 pills aday. I have no one to talk...Reactions0reactionsComments1 repliesCaregiving
Life as the Primary Caregiver: Insights from a Rare Mom...In the rare disease space, a full-time caregiver of someone with a rare disease has a unique mindset. There is often compassion, love, and unwavering dedication to make sure that their...Reactions0reactionsComments0 comments
How My Therapist's Questions Help Me Manage Medical Trauma...As a person with a history of medical trauma related to my rare diseases, sometimes I put expectations on myself that are unrealistic or harmful. To help me reevaluate my...Reactions0reactionsComments7 comments
When You Don’t Want Advice on Your Rare Disease...How many times have you had to sit and listen to someone give you advice on living with your rare disease? Probably a lot! From doctors to family members to...Reactions0reactionsComments3 comments
Extremely rare and ambiguous medical case....Greetings everyone, i hope you are all doing well. Time and energy are a luxury that unfortunately i can’t afford anymore matter of fact i am using whats left of...Reactions0reactionsComments2 repliesDiagnosis
Community Conversations: Sharing Our Experiences With Rare Diseases...Every rare disease journey is unique, but we have found here at RareDisease.net that our members have shared experiences. From difficult diagnoses to dealing with treatment and insurance barriers, our...Reactions0reactionsComments0 comments
